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]

That is indeed quite an outrageous suggestion to someone you don't even know,sorry.

[fanjoforthemammaries7850]

All.kids with ASD are different and you shouldn't go around projecting your own experiences onto others.

[Emochild]

imperial

Dd is not violent
Her biggest issue is anxiety meaning she is agoraphobic and anxious about people coming into the house

She can also be demanding of my time in terms of needing to be in the same room as me, sitting next to me and talking AT me

12 year old gets miffed we can't go out much and she can't have friends over -I refuse to send her away on that basis

Dd with PDA can barely leave the house -how do you think she would go on in a boarding school?

[AliceInUnderpants]

Wow, imperial. Not much leaves me speechless, but suggesting that a parent of a child that she should give up one of her children, that'll do it!

[NettleTea]

Emochild my DD, 15, also has PDA and her little brother is 10 and has mild Aspergers. I understand where you are coming from - like you DD is out of school - has been since halfway through year 7, and does very little apart from watch YouTube and go on FB. We have been fighting for 3 years to get her diagnosis (now have one from the ENC, funded by our local NHS) and then on to fighting to get her an EHCP (been nearly a year so far - LA recognise and accept she needs 1:1 specialist tutoring and mentoring but balking at actually paying for it as claim Im 'electively' home educating - no you twats I had to deregister because you threatened to prosecute me for non attendance and wouldnt believe it was anything other than a behavioural issue)
She wouldnt go away, 100% certain of that, and I would feel wracked with guilt as she would judge that I didnt love her and that was why. The behaviour is based in insecurity and fear, so fueling her fears and insecurity by sending her away would do more harm than good. She is socially charming too, so people apart from my friend who also have ASD kids, get it at all. They only see her on a good day. My son's life is often a misery thanks to her controlling behaviour towards him and her meltdowns. I could never send him away. Never.

[claraschu]

As a parent with NT children, I would really hesitate to say anything personal to a parent of kids with ASD, unless I knew them very well. I would worry that saying how "shite" it is (as someone mentioned on page 1) could be deeply offensive. Sure, it looks shite to me to see what you have to cope with, but I don't really know how you feel about it (unless you have already confided in me).

I do think it's hard to say something that expresses empathy and support, without making any possibly offensive assumptions about the other parents' feelings or situation. I guess offering very specific practical help, and trying to give the parent a chance to vent, are the only things I can think of that probably wouldn't offend.

Are there any brutally honest TV programmes or documentaries which would be good for raising awareness?

[Emochild]

Dd gets home tutoring from the medical needs team but I have to argue for it to continue every 6 weeks at her review meetings

[ImperialBlether]

Sending a child to boarding school isn't necessarily "giving the child up", though, Alice. For some children it's a lifesaver.

And I apologise, Emochild; when you said that life permanently revolved around your child with PDA, I thought your other child might be happier away from that. Of course you and your other child are the best judge of that.

I meant that some children who live with violence in the home might be happier living away.

[TwatbadgingCuntfuckery]

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

DC was having a meltdown mid way across a very busy and noisy bridge that crossed a dual carriageway (2 lanes of rush hour traffic on top, 4 lanes going under) I restrained DC and dragged them off the bridge kicking a screaming only to have someone threaten me with the police, social services because I was 'abusing' my child. Little thought given to the fact I was dragging them out of a situation that triggered their meltdowns the only way I could. There is no reasoning with a child in the midst of a rage filled panic attack. Sadly there is no reasoning with dick heads who feel the need to butt in.

[chickensarethebest]

Peppa - I am with you. Life is sometimes beyond bad. I do it on my own and hate how hard and relentless it all is. I have a couple of people in my life who get it, so I can off-load but the day-to-day grind and fight, well that is all mine. What I really, really resent is when I do mention things, I am made to feel like I am whingeing. As for respite - well, I have seen some very good families undermined by social services, so I will keep them as far from my door as possible.
Thank you for posting - it makes me want to cry at how bloody unfair it all is. How hard would it be to have half-way decent support, you didn't have to fight tooth and nail for?

[ohtheholidays]

No my Darling YANBU in the slightest and I wish there was something I could do to help you

We have 5DC,2 of our DC are asd our DS14 and DD8,DS14 also has dyspraxia and just to shit us up that little bit more 2 years ago he came up in a really rare rash that we found out when we took him to our Dr's is a very rare condition that can end your life,it comes and goes and we have to keep a constant look out for it.

DD8 is also asd,her asd is more severe than her brothers and she also has physical disabilities,she couldn't walk till she was nearly 3,she has problems with her feet(she has to have special insoles that are made for her by the hospital)problems with her legs and joints,problems with her bowels and stomach(she still has to wear special pants at home and has accidents at school)problems with her mouth and tongue and issues with her eyesight.

Our DD12 is waiting to see CAMHS we think she has PDA and our DS17 has become death,he was death until he was 3 but after numerous operations on his ears,nose and throat he could hear for the first time since he was 9 months old but now his hearing has completely gone again.

The hospital that delivered our 5DC really messed up when I was in labour with our 5th DC and because of what they did both our youngest DD and myself nearly died,within a year of having our DD I became seriously ill and disabled.

I always said I wouldn't change my children for the world but that I would change the world for my children but just lately things have got so bad with regards to our 3 youngest DC that my DH and our oldest 2DC are really struggling with it all and it feels like we could be reaching breaking point it really does.
I've just lost another close family member of mine as well,that's 3 including my Mum within the last 2 years.I keep wondering when were going to get a break,because we really do need one!

I hope you get your break soon OP,I really do.

[DoinItFine]

Sending a child to boarding school isn't "giving them up".

Peppa, sorry you'very had a shit day and that life is so tough for you.

One of the things I've noticed in recent years is that as awareness of autism and "the spectrum" have increased, it seems to have been slightly fetishised culturally.

An impression is sometimes given that once you understand how to deal with and understand autism that you will just have a child that is a bit quirky and literal but probably a genius.

And I'm sure that can be true.

But in my (admittedly limited) experience, for some children they will never be verbal, they might not be able to use the toilet, they might be violent, they might need residential care, their siblings might need to be protected from them.

It's just a hard, hard grind and not a romantic idyll where understanding how their mind works will make everything OK.

I hope tomorrow is a better day.

[manicinsomniac]

YANBU. Sounds like a living hell and I wouldn't presume to be able to make any suggestions at all

I don't think you should be afraid to say how shit you feel about it though. I think sometimes people say stuff like 'I'm sure you wouldn't change them' because that's what some parents of children with SN do feel and they don't want others to suggest that there's anything 'wrong' about their child. So people become wary of acknowledging to a parent that their life must be hard for fear of causing offence.

I guage my reaction by the individual parent - sometimes I sense it would be wrong to express sympathy as the family do not want change. Other times it seems right because they are at the end of their rope. The same family could present in both those ways at different times. It's about saying what is supportive in the moment, I suppose.

[ChipInTheSugar]

I'm with you too Peppa - I am at the beginning of the journey to get a diagnosis (hopefully) for PDA. It's fucking exhausting. This is my grandchild I'm raising - I should be just getting my life back after years raising my own kids, and instead, I have this. I am at the point of a nervous breakdown again

I have family members who think the behaviour is my fault, well meaning parents in the playground who tell me he'll grow out of it, he doesn't seem that bad, that they would have been able to get him to go through the classroom door if only I'd let them .... the list goes on.

You are NOT alone.

[Medusacascade]

I think for wider readers that it's worth bearing in mind that ASD is a spectrum condition and every person with it is different. Most days my child drives me to the point of a break down. Other days or times he can be funny, warm and engaging despite the difficulties. I always say I wouldn't change him. His ASD makes him hard work but also unique and brings funny moments. I get more than my fair share of wanky comments from the public too. But no, I honestly wouldn't change who he is.

[fanjoforthemammaries7850]

I am really shocked that people think it's OK to suggest to others they should send their child to boarding school. Really out of order.

[ouryve]

I actually wish that people would keep their opinions to themselves unless they're asked for, whatever the nuances of the situation.

I was out with DS1 before Christmas and we'd stopped for some refreshments and this woman kept on talking at us. I had to explain that DS1 can't talk to strangers (selectively mute) as she kept on at him, asking loads of questions. She then started going on about how it was such a shame. In front of him. He's not deaf, ffs! I was feeling a bit rattled myself, by then and told her that we don't need pity, it's just how life is.

We then got the story of how she "cured" a little boy that she met in "ASDAs" who was completely locked in.... Thank goodness we'd finished eating, by then. DS1 wasn't the only one deficient in social skills in that interaction.

I wouldn't have been at all restrained if someone started a lecture in needing parenting classes, like a PP, though. Thankfully, whenever I've had one of the boys in meltdown, the people who don't give us a swerve has been mostly kind and often helpful.

[fanjoforthemammaries7850]

I am doubly shocked because it's a thread about how people don't want unasked for parenting advice.

[ImperialBlether]

Why, though? I really don't understand. Sometimes children need care that is just too much for their parents and other siblings to cope with. There just isn't the help available within the home - as this thread demonstrates.

There are a lot of Mumsnetters who send their children away to school and the children are very happy. I can see why someone might complain about that, if the parents are both at home, but surely if the home isn't a place where the child can be themselves and if there are terrible pressures on the family, then boarding school might be an option.

Again, I was in a violent household. I would have given anything to be sent away to school. Was I wrong to think that?

[fanjoforthemammaries7850]

That was your household

No one should tell someone else they must do this.

[fanjoforthemammaries7850]

It's OK to say have you considered this but saying you must is really unfair.

[AliceInUnderpants]

I thought your other child might be happier away from that. Of course you and your other child are the best judge of that.

No, what you said was "she really needs to live apart from her sister".

[Emochild]

Imperial

Surely you can see that some children that already feel that they have to fight for attention, may feel its a further rejection to get sent away to school

Plus there are practicalities to consider
Who is going to fund a boarding place for a NT child?
Where are the specialist boarding schools for children with severe social difficulties but with no academic learning difficulties?
They either don't exist or are massively over subscribed

[mygrandchildrenrock]

No, ImperialBlether you weren't wrong to wish you were at boarding school. I too spent a very abusive childhood wishing someone would whisk me away to safety. It doesn't mean any of us have the right to suggest to another parent that boarding school is 'what their child needs'.

[FloatIsRechargedNow]

ds and I have evolved a life over the years, it's not at all like 'normal life' in its entirety but it's ok. I've got used to it now, music and food are really affected when they used to be something I would enjoy before. School life is always questionable and I've given up on the idea that I would ever be a 'soccer mom'. We are alone save our lovely dog. We wouldn't necessarily be so solitary if ASD wasn't here but we are and we do 'alone' rather well. I think we are good at living with ASD DS and me and our dog...we appreciate a lot about small things, it took many years to be comfortable with it, I don't think I ever will be completely reconciled with it though.

I share my thoughts with all the other 'alone' parents of ASD children out there