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How to achieve balance - Carers UK Forum

How to achieve balance

For issues specific to autism / Asperger Syndrome.
Sorry, this is a long post!

S is 23. He has autism and related learning disability.

On a good day he is confident, independent around home and college and just "gets on," within the structures and routines set up for him and modified by himself. I feel proud of him and admire how capable he is. He is happy, cheerful and funny.

On a not so good day, usually due to poor sleep/ health problems / anxiety ( all linked) or lack of motivation he has poor concentration, needs lots of responsive support, everything takes an age. On these days he has more tics (movement ones &/or vocal ones) and is more likely to have meltdowns.

He can easily become prompt dependent, this happened at school more than once and was very hard to over come. (He needed a prompt for every mouthful of food and every step of tasks he could previously do all by himself.) Therefore, I try to only give prompts when he is 'stuck" or struggling and wait for him to do things.

The not so good days are stressful for me too. One day, every so often is fine, but a run of them really tries my patience. The fact that it tries my patience annoys me even more. He still wants to follow his routines, but hours behind. He'd like me to have my meals hours behind too, together. He needs my reassurance when he finally does things hours late.

Today I kept calling him down to a late breakfast. He got fed up. He went to shout about it in the relaxing room. I ate mine, cleared etc several hours later (at 1.30 pm) he reappears smiling for his ... Which he gets ready himself and clears away after. My conscience tells me to smile back, reassure him and sit with him. Instead (because I'm human) I feel cross and so wipe down all the kitchen tiles. (At least I'm in the same room to reassure him...)

If he didn't have special needs and lived at home I'd either leave him to it and carry on doing my own things too or roll out the "under my roof ..." speech.

In a care home, the routine would carry on without him, though a kindly care worker might bring his meals to him.

In his own home, he could go at his own pace, but would lose all sense of time.

BUT, he lives at home and I'm more than his carer working a shift and then returning to my own life and need to find a way through the not so good days that suits both of us.

Hi Melly,

Just wanted to empathise, I'm sorry to say I don't have any tips, I've just read your post and you could be writing about my boy, too!

The only way I carve back any kind of 'space' on bad days is to let my son watch more telly or have more computer time than I usually would so that we're not in each others faces but I have never found any way to hurry him up or get him to do anything he's not ready/willing/able to do. I literally run my whole life around him, I feel like those pictures you see sometimes of a single house sitting in the middle of a motorway because the family refused to sell, he's the house, oblivious to it all and I'm the re-routed road! The only other way I can escape is to go for a drive and just take food for him to eat on the way, it just breaks things up and stops me going completely mad, but I'm afraid I've not found anything else that does much.

Sorry that's no help at all but just wanted to let you know I do understand and you're not completely alone! :)
Thank you MumWhoCares,

for listening and understanding. It's easy for others to think our children/young people are spoilt and not to appreciate they are doing the best they can at that given moment ... But that takes its toll on us.

Melly1 wrote:Thank you MumWhoCares,

for listening and understanding. It's easy for others to think our children/young people are spoilt and not to appreciate they are doing the best they can at that given moment ... But that takes its toll on us.

I completely agree, I think when someone has a problem that isn't obvious (ie their head hasn't fallen off) so many people just don't understand what is going on inside their overloaded little systems and I know there are days when just standing up is about as much as my boy can manage and there's nothing to do but go with it. There are so many things we just don't do because the effort involved in him coping with it, me helping him cope with it and then the downtime that's needed to recover from all the coping just makes it too much of a hassle! So I'm sorry I don't have any magic tips but if I get any I will definitely share them! :)
Hello Everyone! I really do feel for You and Understand. I not only have a 34yr old ''Teenager'' Living with Me but also My Husband Who after having a complete breakdown 18 months ago has very recently been diagnosed with ASD ( Aspergers) My Son is also awaiting assessment.
My Husband has needed Prompting and almost 24/7 support for the past 18mths. Before His breakdown He still had all the problems that He has now but was coping to a degree until the stress became too much.
I to at times Would just like an hour or so Where I did not have to think of anyone else but Myself!
On a slightly Lighter Note although it did not feel like it last night when it happened.....
The Great Omelette Crisis
Hubby .. ''What's for Dinner''
Me... '' Have a guess''
Hubby.. Pasta?
Me ...No
Hubby... Pie and Chips?
Me... No
Hubby.. Pizza/
Me... No, I am making Ham and Mushroom Omelette, Chips and Salad.( He likes this so I thought I was safe!)
Hubby... No No No No No No No No ( Said over and Over like a 3 year old having a Tantrem)
Me.. What on Earth is the Matter!? You Like Omelette! You Loved it Last time I made it.
Hubby .. I am Not Having that I won't Eat it..
Me... Well That is All there is..
Hubby... Well I will Go Without..
Me.. Fine, But I am Having Omelette, I Will Make enough if You Change Your Mind..
Hubby... I Won't!! ( At this point I am inwardly Fuming and want to wring His Neck and Tell Him what an Ars####e He is )
Silence! He's not talking to Me, I am ignoring Him.
20 Minutes later As I get up to Make The Omelette
Hubby... Can We have Cheese on it?
Me.. What? The Omelette? ( He usually tells Me not to put Cheese on it )
Hubby.. Yes
Me.. Ok
15 Minutes Later I dish up Dinner and Hubby Tucks in with Gusto and Say's after ''That Was Lovely!'' He looks at Me and Smiles ( I still want to Wring His Neck!) And Say's '' That was a bit Silly of Me Wasn't it.......''
Me... Yes....
Tuesday 31st of March 2015 Will be known from this day forward as ''The Day of the Omelette Crisis''
Oh DancingQueen, TWO of them! I don't know how you and Gilli stay sane.

The Omelette Story reminds me of two stories.

The first is, when S was younger a friend of mine had him to stay overnight (those were the days!) That morning they went to the park and kicked a ball about etc Our friend then asked him if he would like to go to the cafe for a hot chocolate or back to her house for a drink and snack. She was very surprised (and disappointed) when he chose to back to her house. The reason : although he loves cafes, he didn't like hot chocolate.

The second, every evening after we have cleared up from dinner, S ALWAYS asks me what we are having for dinner the next day. Wow betide if I don't know.

My husband has aspy he 23 n I 25 the things he can come up with make sense to him but to me noncence I no the feeling we are human and God sometimes I gr8 I just say for instance me b In Human

Happend yesterday

Ro: *shouts* I sorry
Me: what
Ro: I rele sorry
I walk In to room he in
:( he broke one of my ornaments
(Normaly my answer ok it fine it what glue for or it ok I can get a other better one ... Not this time)
Me: why u do that?
Ro: I didn't mean to I just put brush by it and it fell
Me : why did u do that
Ro: I thought it be fine
I get in a huff get dust pan and brush clear it up
Ro: u don't have to be in such a mood not my fault
I just look at him then watch TV

About 10 min later after I calmed down he comes over
Ro: I am sorry
Me : I. No I sorry
Ro: it ok I no I can be hard sometimes
Me: It not ur fault I do t no wa happend I am sorry didn't mean to snap
Ro : thank u
Then he goes off to cook us some food ... He a better cook than me haha he loves food

Some times just sometime u need to remember but it hard expecally if u stressed or thinking of some think
He still needs promting to do things and help understanding he don't do buses or trains as he freezes if someone asks him something even just the time so I got him a motorbike don't ask lol we couldn't afford a car and he always wanted one so why not he loves it n he happy and very. Very care full on it over thinks things and try's every thing, and he lucky ennough my best friends husband aphas aspy too and they can realy talk to each other and they help each other so much they click like if he dosent get some thing my m8s husband dose and same other way round it nice and lucky for both of them

Sorry I just understand the stress people don't see it and it hard he froze one time when we were togeather coz someone asked him time .. So I said time and they hurled abuse saying he thick and stupid and we had to go home coz he felt useless, I gobby but my husband comes 1st told the to go away (not in the nice way) n took him home and calmed him down and did something eles but he said he felt mean coz we didn't go out coz he froze I said didn't bother me I just wante a day with him didn't matter were... Some people don't get it some people do

I'm sorry about your ornament. It is frustrating when things get broken. Accidentally is easier to get over than deliberately. S never broke anything deliberately until his mid/ late teens, then he started doing it deliberately. Thankfully he grew out of it.

S doesn't understand much speech. He understands written language better. When anxious he ability to understand either goes. When younger he would panic if people spoke to him when out. These days he just tends to blank them. Most of our friends are good at writing things down for him. If folk make an effort, so will he.

Melly1 wrote:Oh DancingQueen, TWO of them! I don't know how you and Gilli stay sane. Melly1
Melly, from what you have said in your posts, looking after S sounds as difficult as my 3 put together! Having said that, just the other day I was stressing quite a bit as they were going out to a McBusted concert in Belfast and all stressing for various reasons - M because it looked as though they were going to be late, A because she couldn't get herself organized and J because the other 2 were stressing - and I declared that I needed several spare mothers as it felt like just too much for 1 mother to deal with.

Most of the time we just trundle along, but occasionally tempers flare and things get quite mad - it used to get even madder when we had our dog Pip, a golden cocker spaniel as she always joined in by yapping her head off. Soon enough, they all calm down and apologies are made.

Hi Gilli,
Your "several spare mothers" phrase sounds familiar. When S and the cat are competing and I'm trying to cook or whatever, my phrase is, "There's only ONE Melly."