things having to be right

[lindy-lou]

Things having to be done the India way,is quite frankly making life very difficult,the main problem is there are certain things we know have to be done a certain way,but other stuff gets made up as we go along,sometimes i feel like she is just trying to play me iykwim?

 

we are having an opposite problem with sleeping,whereas before her operation she would be going to bed at 7-8pm and then up at 1-2am and up all hours,we now have her not going to bed til 10-11.30pm,then she is sleeping through but we are not getting any chance to recharge batteries,anyway...

 

last night she got put to bed at 8.15 pm,she stayed there until 9.10pm when she got up claiming she couldnt sleep,she got put back to bed at 10pm and i fell asleep around 10.15pm,i woke up to her trying to get into bed with me,she managed to kick my (sleeping) husband in the face and he woke up and shouted at her,she was upset by this but i told her it was too hot to sleep in my bed anyway and i took her to her own room,she wanted a bottle of milk and was crying and upset but didnt want me to go and do it,so my hubby came and asked her for the bottle which had a dribble of milk in it,so he could make her a new one,she kept saying in a minute in a minute,so he just took the bottle from her,this resulted in the biggest screaming heebie jeebie fit ive ever seen,she repeatedly went downstairs and begged him to take it back upstairs so she could carry it down the stairs,but it was already being heated up and he didnt want to do it,ive never seen a child so distressed about not being able to carry something downstairs at a specific to her time,i had to just leave her to cry herself to sleep in the end,she was so upset,she wouldnt drink the tainted bottle!!

 

This is pretty much how my whole day goes,having to do things to Indias order,im not allowed to walk down the stairs in front of her,i have to do everything right and not left first,she has to stand,sit,have her cup to the right and not the left (right is good left is bad) every single person who leaves my house has to do the goodbye routine,if they dont then im left with a screaming sobbing mess of a child,and then i feel resentful towards them for not just doing it!! :wacko:there are so many other things that we have to do it would take me all day to list them but you get the gist of what i mean.

 

so anyway.....does this last forever?will i always have to live by these rules?fair enough if thats the way its going to be then i can prepare myself for it but if it gets better at least i know there will be some relief one day,i know no-one has the answers i need but it helps just to have wrote that down.

 

thanks x

[KarenT]

First off, hugs to you and I hope you have a better night tonight.

 

Secondly, India is very young and you have to make all the decisions for her without her involvement. AS or not, she's pushing the boundaries as any child would so that's perfectly normal for her age. But as she gets older you'll be able to work together with her to decide house rules and sanctions for breaking them so that there's no excuse and less opportunity for her to manipulate you. What you described was what I always thought of as the grey area - how do you know if this is something my child can't help or am I being wound up? You have to manage those two possibilities in totally different ways and it's hard to decide what to do in case you get it wrong.

 

As for 'India's rules', I think it is possible that her need for this level of rigidity can be reduced over time. As she's so young it's harder for her to understand logical explanations but that too can come with time.

 

What do the professionals involved with her think? Have you asked their advice?

 

Sorry, that probably doesn't help very much but you sounded like you'd had such a lousy night I wanted to say something.

 

Karen

x

[board]

hello just reading your post i thought my god thats my 6dd she is the same she got to have her food frist and diffrent form anyone else its funny how the same they are my dd6 was only dx on the 12 april so still leaning all the best jill

[lindy-lou]

we were supposed to have a psych appointment in march...never came.

then it was may....never came.

 

rang 2 weeks ago,was told soneone would get back to me....never have.

 

rang again today,was told pysch was in a meeting til lunch,she would ring me as soon as she was out of it....still waiting

 

Im undecided as to how much of it is testing the boundaries as kids do,but ive also been told not to think about part of her doing what NT children do,i have been led to believe that i should think of her every instinct being AS,so im not quite sure how to think on that score,i will say though that she is my 3rd child,and my 2nd daughter was very challenging (and still is to some extent) but not on the scale,or same sort of scale even,as what India is.

 

Thanks

[jb1964]

Hi Lindy-lou,

 

My daughter is nearly 13 and has always been like this - although it does get worse during periods when she's not well, or she's tired or she is anxious and stressed about something.

 

Very often I feel as though I am being cross-examined in a witness box with dire consequences (total meltdown) if I so much as say the wrong word or dare I say it 'lie' (which in my book is when I've become confused or mistaken over something). Her mood can change in the blink of an eye if I so much as say something that either she doesn't understand/or say something that makes her sad. I got home from work yesterday at 5.00pm and it took until 6.45pm for her to calm down over one sentence that I said when I got in - after she calmed down - she told me that she knows that when I'm trying to explain things that I am probably right and that she is being silly by not understanding it because she knows once she's calmed down she will understand - but that she cannot get the feeling out from her head and things just have to be repeated and repeated - we worked last night on trying to visualise a personal cd player and when that thought is in her head taking it out and snapping it hard in half - but I'm reluctant to think this will work next time (which will probably be once I get home from work today!!!).

 

During the last meeting with the Consult. I mentioned that we were again having a few really bad weeks where this constant questioning and tying me up in knots scenario's all the time - and she said it was part of the OCD within ASD - and it was probably because she was stressed/anxious.

 

Sorry can't be of any more help.

Take care,

Jb

[lindy-lou]

thanks jb,it does help to know that im not imagining this!!sometimes i wonder if its just me,i find it so hard living by this dictation of where im allowed to walk,what side i have to be on etc etc,i know it is a control thing and i find it tough to be controlled in this way,i wouldnt let anyone else do it to me,but my knee high to a grasshopper daughter manages it perfectly well!!Its the consequences of getting it "wrong" that i find hardest,sometimes i dont know whats right and whats wrong and that something that was right is now wrong.ARGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH

[board]

we were supposed to have a psych appointment in march...never came.

then it was may....never came.

 

rang 2 weeks ago,was told soneone would get back to me....never have.

 

rang again today,was told pysch was in a meeting til lunch,she would ring me as soon as she was out of it....still waiting

 

Im undecided as to how much of it is testing the boundaries as kids do,but ive also been told not to think about part of her doing what NT children do,i have been led to believe that i should think of her every instinct being AS,so im not quite sure how to think on that score,i will say though that she is my 3rd child,and my 2nd daughter was very challenging (and still is to some extent) but not on the scale,or same sort of scale even,as what India is.

 

Thanks :)hello as i said my dd6 is like your dd they have found out more about my daughter the last couple of weeks they have said that even through she is 6 years 7 month old she is like a child of 4 years 5 moths she dose not under stand things they dont know how she as managed this far i told them she dose what other children do good or bad she dosed understand but yet she is very intellajent you read a book to her and she reads it back word for word with out looking but you change the page and she cant do it she eats something and forgets she had it she for gets to drink you got to keep telling her so maybe your daughter dosent under stander eveything that is going on and thats way she dose what she dose it help here to coup all the best jill

[mum22boys]

What you described was like reading about both my sons.

 

M is 6 and being assessed. R is nearly 3 and I have concerns about him. He was so like your description it was unbelieveable. He would scream for exactly those type of things, if something was not done as it should be, if i walk down the stairs first (they both do that one!!) if hubby does something R wants he screams because mummy should do it. I know how you feel it drains you.

 

Can't answer if it gets better i'm afraid as at 6 it is still going strong. Did make me question R again though as i was hoping maybe this behaviour is something 3 year olds do if they are NT. Who knows, sometimes I feel like I am the only one insane in my house and their behaviour is normal.

 

mum22boys

[jlp]

Hi

We did have this with ds#1 (6 with AS) but it has mellowed, unfortunately to be replaced by other anxieties - G's current one is not to be alone anywhere for a single second, if he's engrosed in the TV and I nip to the loo I hear bang, thump and he stomps up the stairs to shout at me, same as if he wakes up alone in the morning, sigh.

 

Ds#2 does this too and is nt (3 in September) - if ds#1 gets in the car first, or if he wants to go in the back door and I say the front or if daddy takes his coat off and he wanted mammy too, you get the picture (dp goes mad as I'll put his coat on and take it back off to save the 30 minute hysteria - great believer in picking my battles!)

 

It's very hard to know if you should be dealing with things as you would an nt child who is pushing their boundaries (I'm having a similar wonder over eating issues) but I wanted to send empathy if not practical help cos I'm stuck myself!

[Brook]

Hi lindy-lou,

 

My son did alot of these things when he was younger, he still does but they have changed and

maybe matured a little with him, but he's still only seven.

 

He would not let you walk through the door first, he had to be the one to turn the lights off,

if he spilt a drink (which he did many!) he wanted the one that was spilt , he would have

to walk the same route, etc... etc... but the one that used to really drive us crazy was he wouldn't

let anyone else flush the toilet, he had to do it!! if you was on the loo and he was downstairs and he

heard the flush he would come screaming like a banshee up the stairs shouting 'I flush it', he would

then grab the handle and keep pushing it down frantically, as you can imagine this caused probs with

visitors .

 

There are many many more examples I could give, but I'd be here all day!! I know what you mean

though, we felt like we were walking on egg shells most of the time and if you accidentally did

something wrong you were for it!!

 

In time my sons's routines/obsessions have changed and sometimes those old ones resurface for

a short while!!

I did gradually start to show him that it didn't matter if someone else flushed the loo etc.. but this

took alot of time and some screams .

 

He would also insist on the same cup, plate, shoes, etc... he has great difficulty with flexible thinking

and this is something that his school and us are currently trying to work on. He actually let a child

have the 'blue' cup which he normally insists on, and he had an orange one big thing for him!

 

I dont think your little one is trying to play you, I think she is developing little rigid routines to keep some

sort of structure over what can seem a very confusing world.

 

Sending some of these <'>

 

It's not easy.

 

Brook

[justine]

Hi lindy-lou

 

Those bells ring in our house too with Bob. He's seven, our house revolves round him, inbetween that I have a controlling Hubby, a controlling teenager NT and the only person not in control is Moi!!

 

Seeing your post makes me realise that it's not just Bob and that I'm not alone.

 

"Bring it on"! :-)

 

Just

[Eva]

Hi,

 

my son can be like that too. He has to get in the bath first, (with my other son that is), if you read something or say something he likes, you have to repeat it EXACTLY like you did the first time, and just yesterday he wanted me to rewind the video because DS2 stood in front of the tv for a milisecond and he missed a bit. (I didn't though, stood my ground on that one!).

 

Eva

[yoyo]

Hi

We did have this with ds#1 (6 with AS) but it has mellowed, unfortunately to be replaced by other anxieties - G's current one is not to be alone anywhere for a single second, if he's engrosed in the TV and I nip to the loo I hear bang, thump and he stomps up the stairs to shout at me, same as if he wakes up alone in the morning, sigh.

 

 

You are describing me as a child and, to some extent, now. Things had to be done in just the right order - this I was not allowed away with and I have adapted well. The separation anxiety is an issue I still suffer from. My mother had no sympathy and purposefully made me worse- I should have been immediately reassured about where she was and I would have built up my trust. This did not take place and I now must know at all times where everyone is; this is quite a problem for my DH and grown-up children, who for the most part are very understanding. I do hope your son overcomes this better than I have.

 

Yoyo

[lindy-lou]

Im surprised that so many of you say the same things about your children,i dont know why im surprised,i think sometimes im thinking in my head is this ME??have i made her like that?does she do it because i let her??But the thing is she is the 3rd child not the 1st and i know i havent purposely allowed her to rule what happens,and even if i did i know i cant control her doing things like having to park next to a silver car,having to go to pump number 4 at the garage etc..

 

 

 

Hi lindy-lou,

 

 

He would also insist on the same cup, plate, shoes, etc... he has great difficulty with flexible thinking

and this is something that his school and us are currently trying to work on. He actually let a child

have the 'blue' cup which he normally insists on, and he had an orange one big thing for him!

 

I dont think your little one is trying to play you, I think she is developing little rigid routines to keep some

sort of structure over what can seem a very confusing world.

 

Sending some of these <'>

 

It's not easy.

 

Brook

 

Brook i think your right,i dont think she is trying to play me,i do think these things are incredibly important to her and i had to laugh about the blue cup as she NEEDS to have the red cup at school BUT she wont say that at school but then she comes home and has an absolute breakdown because she never had the red cup at school!!Ive told her teacher but ....well thats another story

 

I think that by doing this like you say is her way of keeping control in her world of confusion,i would hate to be ruled by the need to do these things,it mustnt be a very nice way to have to live must it

[dooday24]

THAT SOUNDS JUST LIKE REECE IT CAN BE VERY DRAINING TRYING TO BE 1 STEP AHEAD TO STOP THE SCREAMING REECE BECOMES VERY VIOLENT AS WEL BECAUSE HE CANT COPE IN THE SITUATION.