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?

Are you unable to work due to a personal health condition?
The group of parents I know who set up a residential unit did something a bit like this example in Sunderland

www.bbc.co.uk/news/blogs-ouch-28460582

My father a doctor spent years in the 60s trying to help disabled and the mentally ill into the community and most of us support that move but for some families a residential unit is the best for everyone long term. I accept it is very expensive however.

I dont know if community support & testpite would replace the need for residential schools.

Restpite is very postcode driven. I know plenty of people with absolutely none & these would be dc in specisl schools.

Good support/restpite etc would improve thequality of life for families & dc. The reality is i get less restpite now then i did when ds was younger as every year the budget shrinks.

In this borough No special needs playscheme was open in the last Easter holidays.

I had to resign as my younger ds was permanently excluded from school. Hes in a special school now but 4 hours a day. The boys get much longer holidays then mainstream schools. So Christmas for example the holidays overlapped & i had one or other of the dc at home for 5 weeks.

4 weeks at Easter.

The summer holidays will last from the beginning of July until the 3rd week in September...

Very difficult to find employment that will give me that sort of leave & hours...

My ds is 16 now and he has adhd and asd

We have been through hell with him, he's run away, he doesn't sleep that well, he's violent, he's self harmed, he hasn't coped that well in school and I had to give up my job in order to be at home as I was getting called in every five minutes and I needed to be at appointments.

His violence got so bad that social services threatened to take my other children into care if I couldn't safe guard them but I had no one to turn to, ss services refused to help me.

He pushed me down the stairs, threw a screw driver at his one year old sister, punched me, punched his 3 year old sister and left bruises, threatened to stab them at bedtime. Calls them slags and bitches and last year put my dp in hospital as ds went for me, dp pushed him away and ds pushed dp through a glass table and dp needed surgery and ended up with 17 stitches in his arm.

He's nearly 17 now and I've just lost his dla and carers allowance as he can walk and talk. He has done so much damage to the house, holes in plaster board, doors off hinges, smashed windows, he's smashed my stuff.

He has calmed down a little this past year but he still can't cope in crowded situations or shops but he's learnt to take himself out before he has a meltdown, he still swears all the time and I get mutters and looks and shit parent comments.

The effect it's had on my other dc is awful, dd1 who is 13 has been through hell, she now self harms, has eating problems and moods wings, but 9f course it's all my fault according to TAC, I have no boundaries and I need to be firmer, yeah right

Ds finally diagnosed with aspergers at 13 where's the help and support yeah ok.

user my younger son school was created by a family in the 1960's.
Now predominantly Special Schools are set up by companies & increasingly academies.

Financially the academies sre offering a more cost effective way of educating SEND dc. Private/independent settings will struggle to get the funding from LEAs in years to come.

Late to this, but YANBU Peppa

I have a Ds with ASD/PDA, I'm lucky that he masks in school so we don't have the school battles, he also responds sometimes to PDA strategies.
Day to day life is very difficult, but comments from others make it feel worse, because they see Ds being controlling (but generally not in meltdown) and me apparently pandering to him, there are many judgements about parenting, no recognition of the fact that we have gone from constant violence, being attacked several times a day to "only" being punched, spat at etc three or four times a week.
You would think it would be fairly obvious to someone having been told about certain behaviours that replying with "Weeellll, just playing devil's advocate......." and proceed to trash your parenting, not making Ds sleep for longer, not allowing him to be violent, just getting really cross with him, spanking him etc. isn't helpful.
This isn't friendly advice, or not knowing what to say, this is calculated judgment without even trying to understand a very difficult situation. From professionals this makes you feel hopeless, from family, it makes you feel alone, misunderstood and rejected, particularly when family was very important to you.

mummytime, I hope when you said, "Actually residential school suggested by someone who doesn't know sounds more like the old policy of just put them in an institution" you weren't referring to me.

YANBU. I have little experience of ASDs and agree we need more awareness but from what I see and hear it's not something you'd wish on anyone.
Petal40 what is "poo smearing" about? I've heard of it in mentally ill adults but what is behind it? (Genuine question)

My DS has smeared since he was 4 - in phases, sometimes every day and then not for a while. I think it's a sensory thing. He likes to smear over himself but also windows, walls, any surface. When he was younger OT suggested special suits for night time (when it mostly used to happen - awful to discover in the middle of the night or in the morning) that zipped up at the back which meant he couldn't get his nappy off and smear. They really helped.