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?

[fanjoforthemammaries7850]

DId you read all of my posts?

I said suggesting it was fine as an option.

The poster said (not to OP either) that a poster MUST send their child to boarding school. Like they'd be a bad parent if they didn't.

Now this is being made into a much bigger deal than it was because I keep having to clarify my objections. Which are not to residential school. But to someone (not even OP) being told they MUST send their child away for the protection of other child, whilst knowing nothing about the poster'a child.

Now I won't post on that subject again. It is seeming like I am massively het up about it because people keep misquoting and misreading what I said and not reading all my post. Sorry OP.

At the time I was just at comment to another poster.

[fanjoforthemammaries7850]

FwIW I agree with Alice OP. You need to talk about it more. Can talk to us here any time.

[katemiddletonsnudeheels]

fanjo, she didn't say that.

[fanjoforthemammaries7850]

Also FWIW I dont bear any hard feelings towards Imperial who made original post..she had her reasons.. As I say this has all been blown out of proportion.

[fanjoforthemammaries7850]

she really needs to live apart from her sister.

Anyway such a minor thing.

I am not saying one more word on subject.

Sorry OP. This thread is here to support you and not be derailed by silly bunfights.

[katemiddletonsnudeheels]

If the thread does turn into a bunfight, it isn't really fair to blame imperial for that, as she has not posted on it since last night.

I think we all recognise how difficult autism can be to live and to deal with, whether that is a sibling, child, or other caring responsibility. As such, being able to say how we all might feel, is important, and I don't think one posters view trumps anybody else's in that regard

[Thornrose]

Onenight

My dd is 16 I'm about at breaking point too.

I get sick of people telling me success stories about other teenagers with AS. It doesn't help, they are not my dd.

No mum, she won't end up at university like your next door neighbours, brother in laws child, ever!!

[fanjoforthemammaries7850]

Jeeze. I said I don't blame imperial for anything.

It's other people trying to stir it up.

Please stop talking about it.

Sorry OP. I would love to support you..I will leave thread for a bit so it doesn't get derailed any more.

hope today is a better day for you

[katemiddletonsnudeheels]

I think fanjo, that would be best

[Thornrose]

Peppa your posts resonate so strongly with me. I hear you and agree with everything you say.

[dementedma]

timely Tess beat me to it. This thread is so sad and the difficulties some of you are facing are truly awful. And, as many posters have said, NT parents don't know what it is like. But then criticise NT parents for not knowing the right thing to say. I dread saying or doing the wrong thing to someone in circumstances of which I have no experience.

[PeppasNanna]

So say that dementedma!

[PeppasNanna]

Sorry posted too soon. I would much rather someond say, 'I've never encountered autism, i really dont understand'.
My issue wasn't with NT parents but professionals etc. Family that see how much my life has changed...

[dementedma]

Is it OK to offer to help, say, in a supermarket where a child is having a meltdown? I offered once and was told to fuck off and mind my own business, so am never sure if help would be welcome or not.

[PeppasNanna]

fango Thank you for your input. I do appreciate it & 'get' where your coming from.

HCPs generally have encouraged me to use medication as a means to cope. Some have said i should appreciate how much better my 'set up' is then other families.

The old line of 'Your doing a great job' is often over used by HCPs.

[PeppasNanna]

Would you know what to do when a child was having a meltdown?

[user1463231665]

I would send them to a residential unit if they were mine but then a lot of parents I know send their chidlren to board anyway so it's not something beyond my experience. I cannot see what you gain by not sending them to board. I know people with children with huge difficulties who do very well at residential schools.

The bigger problem is when they turn 18 so finding a residential unit for them is the issue. May be then (and again I nkow people who have done this) setting up their own unit (if they earn enough for this) which is residential works too.

[PeppasNanna]

user residential school is very expensive & very difficult to access as many posters have pointed out. It not a choice available to the majority of parents.

Most parents like me financially are very limited so wouldn't be able (financially or mentally). I can no longer work.
My Exdp & i were very comfortable until 10 years ago. I now live on benefits in a rented house...

[dementedma]

No,peppa but I was willing to pick up the shopping which had fallen out of the basket or keep an eye on the toddler, while the parent in this example dealt with the meltdown in the older child...

[PeppasNanna]

Thats great dementedma.
I know I would say thankyou!

[katemiddletonsnudeheels]

All the 'is it ok to ...' miss the point. Whatever peppas answer is, she is not representative of all mothers of all children with additional needs. It really just comes down to being polite and considerate. I'm sure no one needs me to point out how wide the spectrum is: this isn't a Q and A for all parents with all children with special needs!

[MorrisZapp]

MN is full of people who are angry or upset because others don't know how to respond to their sensitive circumstances. They give examples of the wrong thing to say, but examples of the right thing are usually short, simple sentences that don't add up to a conversation and don't translate to real chat.

The right thing is also the wrong thing for many people. So there isn't a definitive right thing.

The upshot in my experience is that it's easier to avoid the company of the person with the sensitive issue, because causing offence is too easy.

It's a shame but life doesn't come with a script. What cheers and reassures one person might cause another person hurt or even outrage. If its a close friend then generally it's easier because you have an honest relationship and can ask or infer what approach they'd like.

But if it's a less intimate acquaintance or workmate, best just avoid the whole conversation as it's too risky. You may look uncaring but it's better than actively hurting somebody.

[lottielou7]

Yes, indeed - it certainly is very difficult to argue that a residential school is the minimum your child needs. The Local Authority has to agree to fund it first and residential placements can cost upwards of £90K a year, per child! So they are not keen to agree to them at all. Often there is a battle between the LA and social services about who would pick up the tab.

[mummytime]

Actually residential school suggested by someone who doesn't know sounds more like the old policy of just put them in an institution. And if you learn what happened in them it is a huge tragedy.
The problem is always money, we don't have enough money to give the best support to every child and their family. Just look at the lack of respite care.
Most families I know have had to fight long battles to get their children the residential care they need (sometimes at a cost to the tax payer that far exceeds Eton). It's not simply parents not wanting residential care, although in a lot of cases it is not really necessary - especially if there was community support and respite care.

[PeppasNanna]

MorrisZap;that's what most people do, its easier for everyone but very surface. Its a way to manage the awkwardness of the situation...

lottie 90k for residential would be very cheap! Im in the S.E so thats a factor.
I only know a handful of children in residential settings. The majority in the end due to the family breaking down...