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AIBU?

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Original poster

To cry because I hate autism

261 replies

PotterBot · 03/06/2016 16:10

Just took two dad's to the cinema. I checked 40 times at least with eldest dd about the film. X-men.

We lasted less than 45 minutes before we had to leave.

Too many people, too much noise and a film about the end of the world.

I feel like I'm doing it all wrong. Younger dd upset because she had to leave and wants to stay.

I know that in the bigger scheme of things dd could be so much worse and this could be so much worse, but right now I want to cry.

OP posts:
AllegraWho · 04/06/2016 21:38

Mine is 19 now, and we have not had a hospital admission for three years now, so it's possible for things to get better. I would have given my right arm 3 years ago to know that it is possible to break out of the vicious circle, so perhaps it might help to know that it is a possibility.

Bad news is that after that last hospital admission DD basically did not leave her room for two years. Then she turned 18 and was finally able to see someone other than CAHMS, and have medication other than prescribed to her. This has helped bring anxiety, intrusive thoughts and self harm under some semblance of control. She is now finishing off her A Levels and volunteering two days a week at an animal shelter. I honestly would not have believed that this was possible 3 years ago.

DixieNormas · 04/06/2016 21:39

This reply has been deleted

Message withdrawn at poster's request.

KatieKaboom · 04/06/2016 21:42

That's really good about your DD, Allegra. Does she have contact with the animals? Does it help her?

AllegraWho · 04/06/2016 21:45

We had that from both my mum and ex MIL over the years, Dixie, not to mention innumerable randoms and experts. "Just tell her to stop". Gee, you think ? Then she'd have a meltdown, then it would be "you're gonna have to medicate her or hospitalise her". Oh, right. Can't I just tell her to stop ? Hmm

AllegraWho · 04/06/2016 21:52

Katie, yes, she does, and it does, hugely. I have honestly not seen that girl genuinely happy since she was about 8 (and starting to realise how different she was), until the first time she came back home from a day at the wildlife hospital. She now hopes to go to uni in a year's time to study veterinary nursing, but if she finds she can't cope with that, there is the plan B,which is animal care course at a college she could commute to while still living with us.

Seriously, that was one of the happiest days of my life, when she came home and said "I know what I want to do with my life".

fanjoforthemammaries7850 · 04/06/2016 21:56

Thorn,,take care of yourself Flowers

Those getting all sorts of comments about their younger kids and disciplin, it does wear off a bit as they get older. People who told me I just spoiled DD or babies her etc now feel a bit daft now she is 9 and non verbal

fanjoforthemammaries7850 · 04/06/2016 21:57

Excuse bad typing. Very tired. Not even on the wine (for once Grin)

KatieKaboom · 04/06/2016 21:59

Dixie- how frustrating. My late grandmother was the same with my brother... and she was a bloody nurse who should have known better. Angry I miss her because she was wonderful to us NT siblings, but she was always loudly coughing and whatnot, which sent my eldest brother into a rage- we'd hear his room being smashed up- then she'd act all innocent, 'Why does he do that? Why don't you tell him to stop? '

My own child is far less aurally sensitive- she can tolerate noises like coughing or a vacuum cleaner. Terrified of cars, buses and so on, though- which makes going anywhere fun. Upcoming holiday to see the grandparent... on another continent... I wish I could issue all the other passengers with earplugs and aaaaargh silent scream.

KatieKaboom · 04/06/2016 22:01

Allegra, that is amazing and made me well up. Just beautiful.

notonyurjellybellynelly · 04/06/2016 22:08

Thorn, yes, that was me.

Would you like to have a natter?

You could message me if it would help.

Please don't feel ashamed of your daughter having to be put in an observation room and not just because its only last week my son couldn't have a CT Scan done because they nurses wouldn't have him on the ward due to hi being really unstable right now and a danger to himself and others. We've sorted the CT Scan out now and my only thought at the time was -mhmm lets see how we can make this work to his advantage.

I can't recall if your girl is on medication and if not I'll say its nothing to fear and may just make all the difference to her life. So if they do suggest it then try to pluck of the courage to 'go for it' and don't do what I did which was to say - ok, just a little bit at first. By doing that I did my son no favours whatsoever and I deprived him of a few weeks where he could easily been more comfortable than he was.

Hopefully life's going to improve for your daughter now that she's in hospital and people can give an in depth professional opinion on her condition.

DixieNormas · 04/06/2016 22:23

This reply has been deleted

Message withdrawn at poster's request.

LongChalk · 05/06/2016 01:03

Oh Allegra, that must have been a wonderful moment!

Original poster
PotterBot · 05/06/2016 19:42

Yay so dd said fuck at the dinner table in a jokey way. My DP (who is not her dad) lost his temper. I lost my temper at dp.

Feels like we are all one big happy family right now.

OP posts:
KatieKaboom · 05/06/2016 19:51

PotterBot Flowers

Your DP needs some self-control. Not that it matters, but how old is DD ?

insan1tyscartching · 05/06/2016 19:53

It's not exactly love and joy here either Potter. Dd has school tomorrow which instantaneously makes her foul. She still hasn't started her homework in spite of numerous offers to help all week. Any reminder at the moment will lead to strops and tears. Feel irritated though because it is Art homework,she loves to draw,she has been drawing all week,she is very talented but she can't or won't do the homework.
Ds is very quiet, he's at college tomorrow,half expect a note under the door telling me he's not going tbh as he'dbe far more stresse than he is if he intended to go.

Original poster
PotterBot · 05/06/2016 19:57

She is 11, I immediately picked her up on it. And said that's rude you can't say that. He then snapped I can't believe she just said that, it's so rude. Cue meltdown. She storms off from the dinner table.

I've told him 10,000000 times you need to read up on what I'm dealing with here.

I told her off, I told her it was inappropriate. I don't think he understands.

OP posts:
shotwithmyownbagsofshit · 05/06/2016 20:16

My DD (24) has autism and multiple medical problems.

She lives with DH ( he is her step dad) and me.

DH is fab with her but a couple of years ago after taking her camping ( oh god even camping is complicated ' this isn't my bed is it?' ' where is my Xbox' 'why can't the cat come?'.... Over and over again. ) he put his foot down and said he couldn't take her on holiday again as we need respite - she sits with her handbag on her knee waiting for us as we run round getting stuff ready, and after telling us she has all her medication we find out she doesn't have what she needs when in the middle of no where. And she won't get out of the car to look at the view - we were up mont ventoux and we said come and look at the view... She said she could see it through the window. .... I know I know it was windy and that would be just sensory overload but look at the fucking view and react to it!!!!!!

Sorry .....

It is not fucking holland .... It is not fucking anywhere... It is getting to fifty and knowing we can never retire and be child free... Ever

insan1tyscartching · 05/06/2016 20:28

shot I felt incredibly low when ds hit 18 and I think it was because it dawned on me that it was forever. Even though I'd been told when he was three he wouldn't be independent it was as if it finally dawned on me when he hit 18. He's great and I love him dearly but I am as tied now as I was when he was five which because I have older children means I've been in that dependent child state now for getting on for 30 years.
Yesterday I went out with adult dd but had to be back at 3 to get ds some food because he can't and he won't allow dh to do him food so even on a break from it all it's time limited.

Aeroflotgirl · 05/06/2016 20:33

No littleMissBossyBoots that is totally wrong, I hate that dd is anxious all the time, that she may never be independent, the struggles she faces as an Autistic child, that she has to have a carer accompany her to tap and ballet, whereas all her NT peers go on their own. I hate that she haas to go to a special school, away from her NT peers, and that she will not cope in mainstream. I hate that her future is uncertain, and worry about who will look after her, when we are gone, I could go on. No I do not hate dd, I love her with all my heart, but I hate what she has to go through as a result of her Autism.

Op I hear you, I really do FlowersFlowersFlowers. Yes Holland is lovely, but I blooming wanted to go to Florida and see the sights there.

knittingwithnettles · 05/06/2016 20:53

shot I can remember refusing to get out of the car!!!Blush and just thinking, well I can see the view out of the window...

I don't take ds2 now on any holiday which I think isn;t going to work, I just don;t have the patience to feel cheated out of the holiday I should have had. Having said that, there are lot of things he does enjoy, or small doses of things that other people would enjoy for an entire holiday, so we concentrate on those. And sometimes pushing his boundaries (for a short time) gives him a bit more confidence to try the same thing another time. However, it can take a lot of practicing to get ds to enjoy something that he has a bad feeling about. Like sand between his toes, stately homes, or flying, or waiting in queues, or long car journeys. He does like waves, long walks to a clear destination, train stations and restaurants now though.

I think respite is a very good plan. Even people with NT children need a break from their children, when they get older.

insanity could you practice letting ds take food from dh in front of you, and build it up slowly? Ds2 is incredibly suspicious of new foods prepared by other people, for example if I make the same meatballs as dh (ds2's favourite and the only way he will touch something in tomato sauce) he immediately starts taking it to pieces in search of miniscule pieces of onions which he assumes I have hidden in there. It is almost as if he needs to have dh standing there to serve it to believe it is edible, it annoys me, but I suppose if I played along with it over many weeks I could persuade him to eat something similar which I had cooked. Otherwise he eats a lot of my food, but only it he has always eaten it, ifysim.

Today I went out by myself for a six mile walk; I kept thinking I should get back to organise stuff for the kids but I stayed away and walked more, it's very easy to get sucked in to always being the one who feels responsible; dh was actually fine, he manages them fine anyway, takes them out etc, but it is just a kind of disquiet, that you really shouldn't leave or something might happen, it never goes, that feeling of being on duty. Thanks t

AllegraWho · 05/06/2016 21:00

We went to Pisa a few years back. First holiday in 8 years (the last one before that was pre diagnosis and we really were.not prepared for how it turned out). DD was really looking forward to it, too.

First day, made it dei MCampdeiMiracoli DD took one look at the crowds and legged it back to the apartment. Did not leave the apartment for the rest of the week.

We never learn.

AllegraWho · 05/06/2016 21:02
  • to Campo dei Miracoli
AllegraWho · 05/06/2016 21:13

Flowers to all of you with less than helpful DPs. My DP isn't DD's father either, and he too has found it difficult to get with the program at times.

Thing is... I never had any choice about this, and neither did DD. We have to try and make the best of the hand we've been dealt.

DP though, he actually CHOSE this. He chose to be with us despite the fact he could have been free from it at any time by simply walking away. That made it easier to cut him some slack from time to time.

And pointing out all how much slacl
was cut made it easier for him to reciprocate.

The partners do need to read up on what they are dealing with though, otherwise the family unit doeasnot stand a chance.

insan1tyscartching · 05/06/2016 21:15

knitting we have tried for years,he won't even take a plate from dh although he will allow adult ds and dd to give him food. Yesterday though ds is abroad and I was with dd so had no alternative. Ds has me over a barrel with food though as he will quite happily not eat and never feels hungry so there is no chance of him ever resorting to dh feeding him and he doesn't eat enough at times so can't afford to let him miss food.

Msqueen33 · 05/06/2016 21:17

I think there's also a lot of grief for the life you would have had. I miss the person I use to be before all the struggles ground me down. The three yr old has not stopped screaming today and we have no clue as to why as we've been home all day. I'm tired. Really tired. School tomorrow is a mixed blessing if my middle child also with asd has a crap day and if my youngest with asd spends all day kicking off. 🍫🎂 to all.