AIBU, it's not my fault or problem, if the reality of having ASD children, makes you feel uncomfortable? !

[PeppasNanna]

I have 2 ds with ASD/ADHD. They are 11& 7.
My boys are extremely challenging. They were permanently excluded from mainstream school by Yr1.

They both attend independent Autistic Specific schools. They have access to every kind of therapy available to Autistic dc. OT, SALT, Drama therapy, lego therapy, play therapy, counselling etc.

My boys have very generous Personal Budgets to access playschemes/restpite. The reality is they are so difficult that the only playscheme that they can attend is £400 a week. So they go for 3 weeks per annum.

Ultimately, the boys are very likely to end up in residential schools. My older ds school is already really struggling to meet his needs & manage his behaviour.

When I try to explain my situation people always make suggestions that, i feel imply, I could do more to cope better.

Actually if you met me in RL I come across as really positive especially about my dc but the reality is they are horrendous. They are physically aggressive, anxious, rigid, unsociable, exhausting & ultimately they both have very miserable existences.

People say crap like, I bet you wouldn't change them? Of course i would!

I have no life, no career, few friends, no money, I'm exhausted, ageing & my health is suffering. My other dc miss out every day duevto the boys needs.

I never say what I feel as what's the point?
I shouldn't worry peoples/strangers reactions, but I do.

The majority of people are lucky enough to not have a clue what I'm on about but still say things like, 'Have you contacted charities' or 'Get SS to help'. Well meaning but not helpful solutions. The reality is there is very little help.or support for families like mine.

AIBU?

Sorry for terrible typing.

Obviously we were In cafe and woman had a cats bum face. Total pursed lips

I laughed because she reminded me of the current #NAS judgyface campaign.

She must have thought I was a very brazen crappy parent.

YaNBu. I really feel for you. People do not believe what they do understand. Honestly, I had no idea of how hard your children could be. Many people have a hard life for different reasons and their reality is so easily disregarded. I have the same situation because of my illness. They really don't want to hear or understand how hard life is for me and how I struggle to look after my DD. Mine is often dismissed as mental illness and yours I expect is dismissed as unruly children, who just need to be brought into line.

People always say to me "oh I don't know how you do it. I couldn't".well I do it because I don't want to give my child up.hth.

Sorry. Not drunk. On road with lots of speed bumps so hard to type.

It's shit op. I work in a school for dc with behavioral problems and it still catches me by surprise how hard work they are.

Does your council do mentoring? I know a few in the school I work in have mentors to take them out.

You're doing the best you can with a really difficult situation that only gets harder. People want to find a Pollyanna encouragement because we're taught to see the positive side.

We were talking about the upcoming street party for the Queen's birthday and I groaned. One of my friends said 'Oh but Lougle it's 20's theme '. I replied 'that won't stop DD1 (10.5, SN, goes to SS) being a pain in the arse '. I love the bones of her, but trying to cope with DD1 in a crowded environment which is noisy and chaotic is just a living nightmare before you've thrown in the time of day, the lights, the smells, trying to keep an eye on her sisters.....

I hate the how do you cope. Not like I have a choice. I deal with it because it's my life.

YADNBU -

as someone who knows anything about ASD or Autism I think we could do with more openness and honesty about the subject and about the reality for parents

There is a nowadays a feeling everything can be "managed" if only people would try harder - as if these things are minor bumps in the road to be gotten over - and any difficulty is a reflection of the parent not putting the correct effort in - clearly this is very far from the truth -some situations are not manageable - my heart goes out to you -

YANBU. You never know what a situation is like until you've been there. I've experienced constant unsolicited know-it-all advice, with other health-related things, and it really isn't helpful.

You are NOT being unreasonable.
No one can understand unless they walk in your shoes.
You are an amazing mother who has met challenges....granted you hadnt a choice inthe matter....but you sound positive, brave, and amazing. You meet challenges everyday that other people would wilt at and yet you put your head down and you push forward every single day. Its exhausting.

I recently had a man give me a 20 min lecture about how crap a parent I was and how I should go on a parenting course. DS2 was having a meltdown. As though that wasn't stressful enough!

OMG. Such ignorance.

I can guarantee you will be an expert and capable parent.

Ynbu. I think it is brilliant that many people with autism of some description have been more in the public eye through their achievements or projects so that now there is more widespread awareness of the condition. However, the high achievements of some of these mean that the more shallow or narrow-minded members of public forget that there are others with the same diagnosis but who will never come close to achieving that, who struggle to live anything that resembles a normal life. So, yes, the assumption is often, as PP said, that children with autism are going to be prodigies of some sort or are 'normal' people who have the odd eccentric quirk like only liking certain coloured clothes or not wanting their food to touch other items of food on their plate.

I recently had a man give me a 20 min lecture about how crap a parent I was and how I should go on a parenting course.

Did you punch him in the nose? Please tell me you punched him in the nose! Even if it was in your head
Bloody hate people like this. I've had that advice on more than one occasion. Yes, it's my parenting. That's why DD is perfectly behaved the majority of the time yet DS can have a meltdown over the wrong bloody socks!

I hear you. one if mine has severe LD on top of ASD. life. is. hell.
We have no family,no support network, no respite. I work all school hours so I never ever get a break. either working or caring.
my NT child gets 'neglected' as I cannot meet her needs. everything revolves around ASD. I had a breakdown recently, GP wants me to give up work so I can have a break. I cannot afford it so now am on ADs to kerp.ne going.I get snide comments for only working part time....half of the family have cut us off. life is awful.for me and the kids (I have truly nothing to offer to them). people really haven't got a clue and think we get lots of help when in fact we get nothing and are left drowning.

Totally off topic but the school sounds amazing. Whats the name?

Sorry i pressed send too early. I have 3 kids with asd. Yes its absolutely knackering and lots of people dont have a clue. What gives me the rage are those who say they will pray for me. Praying is easy. Come and actually help me. Thats what i need

My niece is autistic, we unfortunately live 100s of miles away, so aren't much help.

We were talking the other day, how they only find in the media, experiences of quite well off people coping with DC who are on the autistic spectrum. These families are always smiley, fluffy and laid back. There never seems to be programs, of families just holding it together, struggling to get any type of help, finding them a school getting them into that school. The relentlessness of every day life.

Dsis BL say how shit it makes them feel, they feel that they must be doing it all wrong, always seening/reading these fluffy families showing how well they cope, how unique and special their DC are.

I wish I could be there more for them, their relationship/marriage is no more, they are just a tag team now. But by that it does means both get a respite and concentrate on their other DC they have days out and weekends away just without the other half of the family.

I have a 14 year old with PDA and a 12 year old fighting against the fact that life permanently revolves around her sister

I have people telling me it will all work out in the end -like there's some switch that flicks at 18 meaning autistic children don't turn into autistic adults and I use that term rather than children with autism as it's my daughters preferred term

She has got better at washing -she's up to once a week, but will wear the same clothes in between showers
Her longest spell was 6 months

She's out of school so I never get a break but people say 'just get her told, I wouldn't let mine get away with it'
She can be social and engaging so people just don't see it

Oh and when I asked for help I was advised to send my NT dd to go and live with her dad -the man that only bothers with her for 2 hours a fortnight and doesn't bother with older dd at all

OP, is there a reason you wouldn't want your elder child at any rate to go into a boarding school? It's funny how people see it as such a privilege for upper/middle class children to go to a boarding school that can really meet their needs (sport, music etc) but you are really in the situation where your son could get specialist help 24/7 and you might be able to regain your life. Honestly, I think that's what I would do if my child was violent at home and unable to cope in school. (And yes, I grew up with violence, before anyone says anything.)

Emochild, I hope you don't mind my saying this but I was the equivalent of your 12 year old and she really needs to live apart from her sister. Have you considered boarding for either of them?

Actually I do mind