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

(135 Posts)
PeppasNanna Sat 14-May-16 16:19:53

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?

GrimmauldPlace Sat 14-May-16 16:23:11

YANBU. But people are generally well meaning and unless they've been in your situation then they really don't understand that sometimes the bad does outweigh the good at times.

Msqueen33 Sat 14-May-16 16:26:26

2/3 autistic kids here. People truly don't get it. They imagine their nt kids worst day and it doesn't massively compare. I just don't think people know what to say to be honest.

CodyKing Sat 14-May-16 16:31:03

My neighbour has a very difficult child - he's nearly as big as her and difficult to hold on to - to avoid being running over - the family haven't slept since he was born - he's in a unit attached to a mainstream school so has some access to the other children but can be violent - particularly scratching.

My sympathy is with the mother who's life has changed - she will never go back to work I her highly paid job, her other DC often escape to friends now they're older and need some normality

They've lost count of the number of broken furniture and electrical items -

Holidays are to the same place every year - as he couldn't cope - only family who help are miles away but take home for 3 weeks every summer - other have their other weeks -

I'm sorry this is your life too - but some people do understand even if we don't live your life

Xmasbaby11 Sat 14-May-16 16:32:43

I'm sorry people are offending you. I feel awareness of ASD is getting better in this country but there is still a way to go.

Dd is 4 and suspected autism though people who don't know her well cheerfully tell me she's fine. Or they say things like, she'll be a maths whiz and get an amazing job as a stockbroker. She is so not a maths genius! Others have more or less said it's a made up condition to excuse poor parenting.

Yanbu, it is frustrating and makeS you feel very lonely when people don't listen or believe you.

KimmySchmidtsSmile Sat 14-May-16 16:33:59

YANBU brewcake

Petal40 Sat 14-May-16 16:38:52

I've one with asd.....nightmare.wouldnt wish an autistic child on anyone...I feel for you.its shit.life is shit with a asd child....if you haven't walked in my shoes don't comment...violence aggression.expelled from special school and mainstream...now no school...I now live with a violent aggressive tramp who won't wash....last shower was Xmas. Won't change his clothes.wont wear deorderant...didn't clean his teeth for 2 years because monkeys don't.....spent years smearing poo all over my house and the neighbours kids on the odd occasion he tolerated them in the house....good luck not having a menTal breakdown honey xxxxx

NatashaRomanoff Sat 14-May-16 16:44:51

YADNBU. People just have absolutely no idea of the reality unless they're living it.

Samcro Sat 14-May-16 16:45:23

Yanbu,idonthave kids with asd, we are in the cp world, but get where your coming from, we tend to get a lot of oh you get help so your ok, as if 8 weeks summer holiday is ok as we get touse a day centre for 6 hours 3 days a week, theyforget your doing 24/7 the rest of the time with no help at all.
And dont get me started on the ones who when told that she refues to do something.. In there cosy nt world they wouldn't allow that. Oh god i could rant all day

So yanbu

EponasWildDaughter Sat 14-May-16 16:46:54

YANBU, it's not your fault if others are made uncomfortable by your reality flowers

Cut folk some slack though if they are at least trying to acknowledge you, even if what they're saying isn't much help at all. IME so many people go into total avoidance mode when you're struggling and they don't know what to say. Literally crossing the road to avoid having to think of something.

notonyurjellybellynelly Sat 14-May-16 16:47:18

I understand. And if you'll accept an arm around your shoulder from one mum to another please feel free to cooch in.

Lemonade1 Sat 14-May-16 16:47:47

I'm really sorry OP your life sounds very, very tough thanks

What would you like people to say, or do or to react? I'd love to know so that I can make sure I don't add to the frustrations and hardship of parents in your situation.

( I do think most people say stupid thing down to nerves, not knowing what to say or trying to be positive. Some people are just twats, of course.)

EponasWildDaughter Sat 14-May-16 16:47:52

Obviously that doesn't apply to judgey crap x

SocialDisaster Sat 14-May-16 16:48:53

flowers

The reality is there is very little help.or support for families

Yes lots of jobs created to gatekeep anyone from accesing actual help, whilst looking like they do.

Petal40 Sat 14-May-16 16:50:13

Actually I may be able to give u some advice.....10 yrs a go I would of said I had two with asd......as that's what all the professionals were telling us......to cut a long story short we had to remove both from school...and couldn't find a school that would take both...so they went to different schools....it was the making of the younger one.he never looked back.and with careful handling and being kept separate at home from the older one( I know I know fucking impossible but we did it)...anyway. Wow what a difference that made...the professions got it wrong.my younger son was fine.and just copying his big brother....he's now sitting his GCSEs when 10 yrs ago they were trying to get me to medicate him...not a single problem at secondary school..not even one .

Becoolio Sat 14-May-16 16:51:02

Completely agree op, people haven't got a clue. I have two dc like yours and I find some people so snooty and judgemental about my family. I used to find it awkward to chat in everyday situations about my life but I am starting to find it easier to say, my dc have ASD and go to a special school.

What I find most upsetting is people close to me who know full well the situation I am in but suggest the most ridiculous things eg why don't you drive the children to the south of France for a lovely holiday, we do that every year, it's so easy..... What?! Are you absolutely real? We can't get to the end of the street without incident.

I also find it difficult when people talk about children disparagingly eg he's a little shit when it's describing behaviour typical of my dc.

AnotherUsernameBitesTheDust Sat 14-May-16 16:53:32

I have two with ASD, aged 14 and 8. I used to work in my youngests school. Since I've left I've had loads of people asking me if I've got a new job yet.

The only reason I had that job was because the hours meant I could still pick my 14 yo up. He can't walk home on his own, or be left on his own. So any job I could get would have to be around him as there's no childcare for a 14 yo with ASD here.

So, yep, I'm still a lady of leisure, as everyone keeps telling me.

They just don't get it.

notagiraffe Sat 14-May-16 16:54:34

YANBU. Except, why waste a moment on people who haven't a clue what you cope with day in, day out. Never take a shred of advice or take seriously a critical comment from anyone who isn't experienced in what they are commenting on.

mummytime Sat 14-May-16 16:56:44

Petal40 my DD has ASD, I wasn't going to post as really she is very easy compared to most DC mentioned here . But she will probably get 11-13 or more GCSEs probably all with high grades, that doesn't she doesn't have ASD!
I knew lots of very bright people at Uni who would probably be diagnosed nowadays, it doesn't mean they weren't autistic (and they had their own problems).

Becoolio Sat 14-May-16 16:57:36

Oh yes to the questions about work - when are you going back to work, you retired early, lady of leisure, lady who lunches, so the state are paying you to look after your children?

Petal40 Sat 14-May-16 17:00:24

Sorry mummy time..I've missed yr point?

PeppasNanna Sat 14-May-16 17:00:59

The boys are in separate schools. My younger son has PDA & ADHD so behaves very differently to his older brother. The older ds Special school wouldnt take the younger one after a trial.

To the poster who asked, what I want people to say... Its good to mert someone who says, thst must be absolutely shite or your doing the best you can. Not start talking about something they've never directly experienced or a service they've never used.
flowers Thankyou for all your replies. I will be fine again tomorrow.
Im knackered today & couldnt5get the boys out as they absolutely refused to go out. So I'm stuck indoors with 4 dc. 2 with SN & 2 dds bored out of their heads...yet again!

PeppasNanna Sat 14-May-16 17:03:32

Excuse the typos!blush

katemiddletonsnudeheels Sat 14-May-16 17:03:39

Sounds so rough, especially with two with the same condition flowers

like7 Sat 14-May-16 17:28:16

yanbu. Sounds like its been a shit day. I really hope that talking here will help a little - knowing others really feel for you.
3 weeks care is very little in your situation. (many with ntc will have more than that a year in different holiday clubs, school trips etc and being able to go round friends' houses to play, or grandparents etc.) These kids never get invited anywhere.
I know a bit of what it's like and used to feel so desperate with DS. Even when he was in a respite club I would get stressed dreading him coming home and how I would cope. He went to residential school at 10 (which I have never got over and he's now 20) In the end I felt his life was SO different from the norm that he needed a special home that could give him 24/7 care and also the rest of the family could have some sort of normal life too. (his 2 siblings were really suffering)
We have had the most awful comments, some nasty but most just ignorance or nervous and got it wrong. People cannot understand unless they've lived it and I tried to share a little of what it was like to help them - people were often stunned when I would share what it was like. And although people may think they could manage our kids better than we can, they don't know what it is like to care day after day after day, with no hope of it getting better. (and all the meetings,etc!!)
It's so tough: thank you for being honest and expressing what it's like so well - please give yourself a pat on the back for caring for 4 kids in such difficult circumstances and I hope that one day soon you will be in a much better place, with all 4 kids thriving, and be able to have some long overdue time for you.

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