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?

Of course we don't understand. Why do you expect us to? Perhaps we should apply the phrase 'How do you feel about that?' more often in casual conversation to give you the chance to offload a little.

You blame us for not knowing, and for not having the right things to say. But how can we know? [Write us a list, post it, publicise it. That would be helpful]

I'm asd, so is my dd, my sil, my dgd and my dfather. And we definitely don't have the right thing to say. I get a lot of negativity from mothers of 'different' children because whenever I see something/someone different, I have to pause to process it - asd, not nosey, not staring, just coping with my disability. The 'best' moment I remember was in Asda (see post above/upthread, it all happens in Asda) when I noticed a boy of about seven years quietly demonstrating behaviours I link with autism, and his mum noticed me noticing. First, the fire rose in her eyes, thinking I was staring at her boy, then she recognised the asd in me and relaxed. It was ok. She's the only one I've known to respond like that.

So by all means rant to each other on MN or wherever you can, but have some human understanding for the rest of us. We don't want to get it wrong and we certainly don't mean to offend or upset you by not knowing what, in your head, you would like to hear.

2 on the spectrum here.

Dd is an aspie and, at 21, copes very well. Her teen years were a bit of a nightmare for her as she suffers crippling anxiety. I really tried not sideline her as she was growing up as she was a relatively easy kid to parent until her teens.

Ds is at the very severe end of the autistic spectrum. He is completely non-verbal and his other methods of communication are very very basic. He is prone to extreme violence when he is anxious (especially around uncontrolled dogs). He lived at home until he was 14. Then it became apparent that not only was I no longer able to cope, his autism specific school could no longer cope either. We were so lucky that our SW was brilliant and managed to get him into a specialist residential school less than 20 miles away. I was really uncomfortable with 'sending him away'. It felt like I'd failed him. But, in reality, it was the best thing that could have happened. He is 21 now. His residential home changed from child services to adult so that none of the residents had to move. So he's had that stability and specialist care for 7 years. He's much, much calmer. He can go out with his carers and do things that I would never ever have been able to do with him.

Peppa, I totally get where you're coming from.

I wasn't thinking of the OP paying for boarding school.

However, people here seem to be objecting on some sort of moral ground, rather financial.

Because boarding school is free?

Dixie residential isn't self funded.

Residential school happens when at least two special schools permanently exclude the pupil and the la still have a duty of care to educate the child. It's a last resort and basically lock down for that child.

Just to add - I don't pay for ds's residential place.

I don't object to people sending their own kids to residential school, just to others telling them they must.

Wow!! So many replies.
Firstly timelytess. I never said i expected people to understand but if i met you in RL & you told me that you or a family member had ASD, I would know straight away that you would have a better level of inderstanding of my situation. Thankyou for your reply. I appreciate your response.

The posters talking of residential /boarding school. The siblings would have no grounds for funding so unless i win the lottery that would never be an option.

Its very likely to be something I need to consider but remember, its all about money. I would have to prove to my LEA why my ds should go to a residential school. My boys should be in mainstream school with support according to my LEA, costing them about £16k per annum.
Where as they're schools cost about £65k per annum plus transport.
Residential school can cost £150k a year.

I listened to professionals for years. They all lead me to believe if I got the right support in place, a good school, restpite, activities & therapies, it would get easier...

The reality is I have done everything a parent can do but its still really awful most days. I don't tell anyone. I concentrate on increasing the boys funding or look for yet another Carer or playscheme.

I don't tell or talk about how my older son is verbally abusive. I don't admit I hate the sound of my ds voice. I don't admit my 7 year old sleeps in my bed or that he wets himself daily if i can't take him to the loo in time. I don't admit that i hate 3pm as i know i only have minutes left before the madness sets in.
I don't admit my 2 year old dd knows not to bother talking to me for at least half an hour after the boys go to school as I'm so mentally exhausted.

I don't admit that although I've taught myself to be thankful for what I have, I'm very scared of the future.

I have no family or friends locally. If I get sick or can't cope, what will happen?

All the dc will go in Care.

That is my reality.

If you met me, you would never guess but I carry this with me all the time with a smile & not a sole in the world knows, how i really feel...

FloatIsRechargedNow we're another 'alone' family, DH, DD and I. We're older parents and were never that sociable before we had DD so we cope with the isolation fairly well. It's the lack of spontaneity that I miss and things like not being able to go for long walks, a pub lunch, see friends - or even being able to go shopping all together. On the flip side I appreciate little things far more than I ever did before - like a really good coffee first thing in the morning (makes a 5am start more bearable).
OP YANBU

I like 'Alone' parents/families.
Sums it up pretty well!

Talk about it Peppas. If nothing else, talk about it here... with us x

OP, just to say I'm sorry you're having such a tough time.

OP you've got so,so much on your plate. Im sorry its so tough.
My DC1 has ASD and also had several daytime wetting accidents until nearly 7. It was a nightmare. DC2 has serious medical problems so I often feel like i'm getting hit from all directions, and find it difficult to deal with other people's comments. Some people mean well but get it wrong, Those I can forgive. It's the comments that are blaming or minimising that really annoy me. I have learnt to avoid these types of people. They don't live with it. Living with it all day, every day and seeing everything is totally different to the 30 secs that other people get to see of your child walking past them.
The theory i've come up with is that it's too scary for humans to think that something bad could happen to them randomly (like having a child with a neurological condition that makes life unmanageable), so they attribute the blame to the parent, which makes them feel more superior, convincing themselves that something bad like that would never happen to them.
We however, know differently. Life sometimes randomly deals us a shit hand. I love my kids to bits but could do without the ASD and chronic illness bits. I do have to remind myself that i'm still standing after all the shit that's been thrown my way, and i've done well to still be just getting out of bed in the morning !

Oh pepper have a ((hug))

Dixie, The schools have to permanently exclude them and no other school to take them for residential to happen. The La have to legally educate children so they end up in residential units probably miles and miles away. There are units up and down the country that are only suitable for certain needs so even if there are a few near you they might say well you live in Devon but your ds will be going to Newcastle unless you home ed him.

Meetings happen with all different people and special schools to see if any heads will take them before that happens. I think (not sure) but when to many staff and pupils get hurt that's when it happens. They really have to be the extreme end of extreme.

You are so right alicemorgan - we have done so well ... Everytime I felt I couldn't go on, I would think just one more day, get through one more day.
OP: have you told any professionals how you feel? I think I was really fortunate in that I was very honest with SS and OT, Ed Psych etc and they were very very understanding and supportive. My DS went to his residential school (over £150K pa) when everything was breaking down - his special ASD school, respite, our family life. It was just awful for him to go away (I didn't have kids for him to go away from me) but in the end it was making the best decision for everyone concerned and he coped really well with being away - much better than the rest of the family did. I am aware that with all the cuts it's probably harder now to secure a residential place.
I remember feeling what if I am unwell/too old to cope? (we are older parents) I wanted DS to go to a place of our choosing rather than be rushed anywhere in an emergency.

Sorry life is so hard for you. I understand just wanting to have a good moan and get things of your chest without well meaning people trying to find solutions.

My 7 year old son has ASD and I get frustrated if I tell a friend my son has had issues with something and they tell me not to worry, that their child also does this and its normal. They dont understand that the behaviour may often be 'normal' child like behaviour but its often very exaggerated and distorted. An example; I went to the park with friends and son refused to put shoes on for 2 hours before we left home. We were late as a result and I was very stressed. He ended up wearing his brother's shoes which were like clown shoes as 3 sized too big but they were all he felt he could tolerate. I moaned to friend and just wanted her to say, 'ah boo thats crap, you're here now let's have a good natter...' Friend instead said her son also likes to wear shoes bigger and is a 1 but wearing a 2 etc and I worry too much... Her kids don't always want to put their shoes on, I shouldn't stress about it. Well meaning but it doesn't feel like empathising, it feels like my concerns are being dismissed. It's how its said sometimes too not whats said, as I can see that example doesn't sound bad, but it made me feel deflated. Also, its not like I'm constantly offloading so if I do I'm stressed!

No one can judge you till they have walked in your shoes. I can't imagine being able to cope in your situation to be honest but I guess you have to.

A friend I have lost contact with had a son who had moderate autism. To be honest few hours babysitting knackered me because he was so full on. There was no.sitting down with a cuppa whilst the kids play nicely going on.

So hats off to you for doing an amazingly hard job for little thanks. Any haters can fuck right off as far as I am concerned.

Yanbu - you can't really get it until you live it. Comments that your other kids here, your nt kids being to embarised to bring friends home, well meaning friends saying "but he's the best looking child I have ever seen", family avoiding you, never asking why your four old can't talk - at all - ever, dreading what happens when he turns 18, dreading him ending up in a residential care home, dreading him staying with you, living totally invisible in full sight.

It's hard, it really is

One, one ds with autism and my reality is that I couldn't cope. I reached breaking point after he refused to sleep for three nights and four days in a row which meant i couldn't sleep either and i broke down. He lives with a specialist foster family now. He has become a wonderful, charming, fabulously brilliant boy with the help and support he receives and will continue to receive in foster care, all help and care that was NOT available to me, his birth family. I had no choice.I am physically disabled as well as have quite serious mental health issues due to previous abuse and mistreatment and I admit it, i broke. Many of us do, so few people understand or want to understand the realities of living with a child on the spectrum. He was violent, he was destructive, he screamed and screamed until i genuinely thought my ears would bleed and the refusing to sleep, it just finished me off, i was hallucinating by the end of it and i couldn't take a second more. Am i ashamed and embarrassed? you bet I am. Am I unbearably sad that the wonderful boy he's become is not something I could give him the chance to be at home? absolutely. I love him to absolute death but I wouldn't change the way things worked out for us, it was the making of him and I wouldn't undo it for all the millions in the world

Yanbu, my bil has special needs and he is exhausting, I'm honestly dreading the day he has to come and live with us full time when mil can't look after him anymore. Of course to say this to anyone in real life makes me look awful so I don't. People don't understand until they've experienced something similar themselves.

Yanbu, because that is your experience of autism. But neither am I BU to say that my 2dc with autism, luckily for us, are not challenging, and I wouldn't change them. Autism is a wide spectrum; autism can be shit but it isn't always a purely negative experience or existence. I recognise that I am lucky but I don't need empathy and my boys' autism is not a tragedy. That side of autism isn't much reflected on this thread and whilst I wish I could make things better for you, I just wanted to put out for those reading this thread who don't have personal experience of autism that it comes in many guises. My boys are rather withdrawn and vulnerable, they aren't difficult.

Yanbu - I understand where you're coming from. I have a 14 year old daughter with severe autism. She's very unhappy in a school that can't meet her needs and she has an extremely complex profile. She breaks almost everything she touches at the moment and can be aggressive. I'm waiting on the edge of my seat to see if the LA will agree for her to go to the independent school I want for her this week. I also have another child with ADHD and dyspraxia.

You are right that people have no idea. How could they? Sorry you are struggling right now.

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

I'm not shocked and I think the suggestion was made in good spirit and with the best of intentions.