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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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:
knittingwithnettles · 05/06/2016 21:17

Did she enjoy anything about it or was she desperate to get home?

I'm lucky because ds hates the travelling and he complains incessantly about various things but he actually likes seeing new sights. When we went to Vienna on a very short trip I had complete sensory overload and was too scared really to leave the hotel room, whereas ds was saying Come On Mum, Lets try out the tram system and forced me to do various outings...Once we were out though, his attention span was quite limited, and we had a lot of I'm tired, I need to stop/go back/museums are boring. Whereas by that point I would have been happy to walk for hours, look at pictures, stare at strange buildings, it was just getting out, organising the day and the crowds that were the issue for me, braving the foreign language etc. Ds didn;t mind any of that. He likes adventures, and adding photos to his holiday album (mostly photos of him I may say) standing in front of road signs or monuments.

insan1tyscartching · 05/06/2016 21:23

Allegra we went to Scotland last year ds never left the holiday cottage just like he never left the cottage in Wales. Apparently he doesn't like to be in a different country Hmm so we are sticking firmly with England from now on. Thankfully we always book luxury accommodation because we are well aware that we will be spending a great deal of time there. Ds and dd are very cheap to take away so long as they have a view of the sea from where we stay they are more than happy.

AllegraWho · 05/06/2016 21:27

Desperate to get home, then once she did, devastated that she missed out. I did eventually talk her - and myself - into being pleased that we did at least see the leaning tower in person Smile It's really beautiful, and utterly bonkers.

BTW, those who we've been trying to get their DCs to do something or other for years, keep trying. We achieved certain changes - mostly food related - after literally trying for over a decade. There are others we are still working on, but I live in hope!

AllegraWho · 05/06/2016 21:33

Oh, and regarding homework- this used to be a major source of grief over the years. I eventually kept a diary detailing how long each piece of homework took and describing every meltdown caused and presented the diary to the school. After reading it,they agreed that it was probably better for her not to have to do it. It helped.

insan1tyscartching · 05/06/2016 21:45

She has minimal and the majority is done with a TA in school in a period timetabled in for her so school do try. The Art homework is one that shouldn't be a problem but it is today. What is ridiculous is that it is a self portrait, dd has drawn upwards of 40 faces this week perfecting her techniques in her own sketch books but can't put pencil to paper in her school book. She only gets Art homework once every term so that one and some maths on the laptop (negotiable) and French homework (because she finds French a doddle) are the ones she has agreed to do at home but obviously not this week.

ElornaElephant · 05/06/2016 22:07

Oh, YANBU :( I grew up with two ASD siblings (they're both still little, because of a big age gap and the fact I'm still young myself)

It's really bloody hard, drove my own parents to separation. It's certainly not like Holland! Older DB is now 12 and whilst his autism is severe his speech has always been good which comes with a whole host of problems because nobody understands just how debilitating his autism can be. However as he's maturing, it is getting easier - his anxiety is still crippling but he is now aware of his condition and it's so much easier for him to manage his emotions. Younger DB is very small so we're just getting into the swing of things with regards to meltdowns etc. Thankfully, it looks like his autism is less severe than his brothers but in contrast his speech is very poor which leads to a lot of frustration and screaming :(

Whilst I'm not a parent to ASD children, what I can say is don't ever feel guilty about your NT children missing out. Of course we haven't done the stuff that "normal families" do, but I've never felt like I've "missed out", even when I was a child I don't think there was a second where I resented my sibling or parents. Being a young carer is knackering and exhausting (though not on the same level as a parent!) but it's also made me a far better person. I love my DBs very dearly and I will protect them to the ends of the earth.

AllegraWho · 05/06/2016 22:13

Elorna, have some Flowers Hope your parents are very proud of you.

Tattieboggle · 05/06/2016 22:34

My son has travelled the world since he was a little boy to see his beloved steam trains but now his mental health has deteriorated its had to stop. About 3 summer ago actually. But truth be told it should have stopped about 5 summers ago. I just couldn't do it to him though and it got to the stage we'd travel with a retinue of me and two carers in order to make the trip happen - and not happen very well once we'd reached our destination. In fact the last trip we did I had to give some sedation in the airport and he heard me saying to the staff do we go or not - and at that he took off and got on the bus. It was quite funny in reality because he was looking behind him as if to say - too bloody right we're going. Grin

It was costing a fair whack the more often we did it, 4 business class seats to wherever in the world he wanted to go plus very carefully chosen accommodation once we'd arrived - then all the rest of it. And each year the bill was becoming bigger and bigger and bigger and each year he was enjoying it and able to cope with it less and less even though he'd start planning his trips as soon as Christmas was over.

I'd actually come back of the last trip with a huge black eye that I'd got when we were at home in the Uk, even my most experienced staff member was feeling the pressure. So that summer I decided he'd travel no more but before I could say that was the end of it my son and son in law who are both pilots said to me this has to stop because as much as we love our brother we couldn't have him on our aircraft. He's becoming too unpredictable. I wasn't even an hour in the door when they came to see us and it was a very kindly put case of we are nipping this in the bud now and if DB asks about his next trip you have to say finished now. They knew that once he'd been home a few days he'd start to think about where to go next and they were making sure it didn't take fruit. And of course I really couldn't argue because I was standing there with the mother of all black eye that spread half way over my face both ways.

They said to me we know the PRN medication works well but what do you think would happen if there was an incident in the air, a meltdown about the croissant for example (it was getting to the stage) and I said well they'd treat him like a drunk passenger and that was when they told me the aircraft would be diverted and in some countries they'd open the doors and an armed response team would come on and he could be taken to god knows what kind of hospital. They even showed me on route maps some of the countries we might have to land in and it horrified me as I knew what they were making me understand. There are just some places you do not want your loved one to be in a very vulnerable situation. Of course I told them I'd already decided that my sons traveling days were over but they knew me and thought to themselves - two months from now when she's put the bad bits to the back of her mind she'll be saying - oh we had a fab time.

My sons is heartbroken about his holidays and so am I. And I know for a fact one of the reason he's so upset/unwell right now is because he knows this is holiday time. I hate having to tell him no DS, you are not going on an aeroplane.

For years he'd go to the NRM in York so he could see when the Flying Scotsman was going back into Service and this was to be the summer we were going to go on the Flying Scotsman. I have the sight of it on the TV, its all just so bloody heartbreaking.

I travel alone now and each and every time I go somewhere I can't believe we actually managed to get him to experience all that he did, because each and every time Im on a plane or in an airport I see situations all around me that would have the potential for absolute disaster.

I have very mixed feelings about his travels now. I think to myself at times why in the name of God did you ever start it? But then I think of the great times we had, times like arriving in North Wales one evening to see Thomas and going out for a walk, then when we crossed over the bridge there was Thomas sitting in the sidings. I will never ever ever forget my sons face at that moment as long as I live. Then the next day they let him shovel coal and blow the whistle in the station - he even took part in a story being acted out and there he was at 15 years of age running about with wee things giving Thomas a drink. But now Ive had to take it all away from him and I still dont know if we should ever have indulged his love of steam trains and travel.

knittingwithnettles · 05/06/2016 22:49

Ds2 is also obsessed by steam trains and plans a lot of trips (which we have never taken him on I'm ashamed to say, luckily they were mostly too long or clashed with school) However for him it has been a drive to independence, he went off the station to photograph the Flying Scotsman by himself (local station) - the first time he went with his dad.

I think you did the right thing taking him Tattie - what a lovely memory of him seeing Thomas. Could there be some other trip he might enjoy which is not on a plane (ds2 hates planes but is thrilled by the thought of them and airports and routes Sad) Ferry? Docklands Light Railway is fun if you are near London. Also I've discovered loads of little holiday trains in Devon for example and Norfolk and Cornwall, and of course the Bluebell Railway. But I'm sure you know all those. Ds talks incessantly about something he wished he could do, but slowly accepts that some other interest might be fun too. Although we still have flashes of rage over the fact that I never took him to Drayton Manor and Thomasland.

Tattieboggle · 05/06/2016 23:05

Knitting - how fabulous for you son to have done that. I hope he had the best day out ever Smile

We dont live in the Uk, or a country where there are trains, so anything involving a steam train is at least an 8 hour flight away for starters.

Re Thomasland - we went there once and he still asks to go again.

And I think he's done all the Heritage railways in the Uk at least twice and sometimes 4 or 5 times over if they're near our home in the UK that we'd visit once a year for a couple of months.

Thank you Flowers

PeachyTheSanctiMoanyArse · 06/06/2016 11:33

I don't hate autism. I hate the stress that trying to cope with autism in an unsupportive world can bring. We have ds1, 1&, ASD; ds3, 12, ASD; ds4, 8, ADOS results next week; me, 42, DISCO Abbrv results due end June.

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