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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Being asked the same question over and over and over and over and over and over and

50 replies

HecateGoddessOfTheNight · 03/10/2011 09:30

over and over and over and over and over and...

How do you deal with it?

There is a 'script' I am required to follow.

For example

X "Whatcha Dooooing? Who says that?"
Me "Isabella"

repeat 100 times. and then repeat a hundred more.

This morning I snapped

I said "You have already asked me that hundreds of times (and no, I was not exaggerating!) You know who it is and I am not going to answer it any more."

Now I feel horrible.

What can I do instead?

I have already tried responding "who do you think it is?" but that isn't satisfactory, apparently.

OP posts:

StarlightMcKenzie · 03/10/2011 09:36

I say 'okay, one more time and then no more repeating'.

Then on the next time I say simply 'no repeating'

Then completely ignore any attempts after that. At first it got a bit fraught. Why wouldn't it? He'd had me answering loads in the past and didn't like this new change, but shortly he understood and it isn't a problem when I say it.

'No repeating' has subsequently become a really useful instruction in our house.

Original poster

HecateGoddessOfTheNight · 03/10/2011 09:38

That's a great one, starlight. I can't believe I haven't thought of it

Can't see the wood for the questions, it seems

OP posts:

StarlightMcKenzie · 03/10/2011 10:06

I dunno. Sometimes it is hard to work out a strategy when you are just so blimmin frustrated. I will say though that sometimes you just have to stop being a 'good parent' and be a human being.

DS has a stim which drives me bonkers. I got lots of advice on it, which was to redirect it, manage my own anger that it creates, let him do it in a controlled way, but I couldn't count to 10, because it was so distracting that I only ever got to 2.

In the end I reverted to 'Stop it, just stop it. I don't want to hear it any more. It's driving me insane and hurting my ears. I said STOP it right now. Stop' and apparently that reaction hurst HIS ears and seems to work eventually. Probably not good practice but sometimes you have GOT to be allowed to have zero tolerance surely!?

Original poster

HecateGoddessOfTheNight · 03/10/2011 10:11

I suppose so.

Actually, I'm lying. I don't suppose so at all.

I feel like I HAVE to be Super Perfect Mother crossed with Autism Advisory Teacher crossed with SALT crossed with SSSEN all the time. With all the 'interventions' and the 'strategies' and be constantly actively teaching them socially acceptable behaviours and doing speech therapy and 'bringing them on' so to speak.

Now I sound like a nob

OP posts:

StarlightMcKenzie · 03/10/2011 10:19

No Hecate we all feel like that.

My justification is this: DS can experience what a NORMAL reaction to this particular STIM in from someome who still loves him -

Becaroooo · 03/10/2011 10:24

Absolutely....I say the same to ds1. Felt bad at first...like it was my "job" to answer every question in a thoughtful, meaningful and loving way but you know what??? At 4am I dont really want to be answering questions on tudor farming practises

I will now answer once, answer again when if asked and then say "I have answered that question twice. The answer is still the same"

Ds1 has dyslexia though and I think sometimes he genuinely doesnt remember what I say

Becaroooo · 03/10/2011 10:24

...and it has never occured to me - in all ds1's 8 years - that his constant repeated questioning could be a stim.

How dense am I???

Marne · 03/10/2011 10:57

I try and turn the question around by saying 'what do you think?' or distract with something totally different.

Marne · 03/10/2011 10:59

oh, just spotted that you already do that , maybe just ask him a totally random question to break him out of it. We used to get alot of the repeating with dd1, she doesn't do it as much anymore but her sister has just statrted .

AlysWho · 03/10/2011 11:14

This still drives me cerazy 14 years later! Reassuringly it also drives her special school teachers of many years experience up the blooody wall too! we all say, we've answered that q already you dont need to keep asking it.. She then carries on the whole dialogue quietly to her self..

silverfrog · 03/10/2011 13:10

oh, yes, I know exactly what you mean.

dd1 is queen of verbal stims.

imo, it depends on what the function of the behaviour is. dd1 can get into repetitive ptterns for a variety of reasons:

she likes the script. it may be a joke (or her version of one ), or it may be part of a story, or whaever - she just likes the words.
she is upset, and it is a soothing routine for her - especially if something has happend which has really rocked her world, and she needs reassurance that all is ok, she will revert to a familiar script.
to control me - to make me do something that is at her bidding, as I have to play a set part in the script.

the list goes on, really. and how I deal with it dpends on what the funciton is.

if it is 1), then I will do it for a bit - sharing a joke, or re-living a happy moment for her is nice (up to a point). but I will (these days, and not always - am not above a "FGS STOP it! I can't hear myself think!" type response) often resort to a "I will say it once more, and then finished" response. o maybe set aside a time for her to do it - "at 4 o' clock we can do that as often as you like, but at 4.20 it is finished" or "no more now until 4 o' clock" etc. this works surprisingly well - I use it for delaying when dd1 can ask about meals (she is obsessed with knowing what is for lunch, then tea, then lunch tomorrow, then tea tomorrow etc). so she asks me first thign what is for lunch, and I tell her a time she can ask me about it. works well, and has the added bonus of practising telling the time

if it is 2) thenI go with it. anything else woudl not be reasonable in the moment. she needs calming, so we go with it, but reduce as for 1) as soon as possible

if 3) then I ignore (once I realise that this is the function). and we have the reactions as Starlight mentioned - not happy, going through a huge range of emotion and escalation of behaviour etc. but she cannot get away with controlling me.

dolfrog · 03/10/2011 15:04

Becaroooo and all

"I will now answer once, answer again when if asked and then say "I have answered that question twice. The answer is still the same"

Ds1 has dyslexia though and I think sometimes he genuinely doesnt remember what I say"

What you are describing is a severe form of Auditory Processing Disorder (APD).
to be more specific when you say
"Ds1 has dyslexia though and I think sometimes he genuinely doesnt remember what I say" Dyslexia has three cognitive subtypes, and it is the auditory subtype or APD which causes him not to remember what you say, which happens wit all who have APD is it all part of having a listening disability, or not being able to process what you hear.

When you say
"I have answered that question twice. The answer is still the same" this has little or no relevance to amny one who has APD you may have answered the question in way that you can process but not in a way that your APD can process, or may need different ways of processing that bit of information.

Then there is all of the recent research regarding the auditory cortex problems as one of the multiple causes of ASD, which again will be partially APD. So these issues are not necessarily about a behavior issue more a problem of explain or providing the information of communication in a way that is more your DC friendly.

Living with those who have APD can be just as frustrating, I have APD as do all of my family, and we all have different communication needs, and the same information has to be explained and describes in many different ways so that we can all begin to understand the same idea. So may be you need to explore different ways to providing the same answer, so that your answer can be understood.

dolfrog · 03/10/2011 15:14

StarlightMcKenzie

"My justification is this: DS can experience what a NORMAL reaction to this particular STIM in from someome who still loves him"

This can also be called being prepared for not being understood and future disability discrimination. If you family do not have time to understand you, why would anyone else. I get this all of the time, from the so called normal society.

dolfrog · 03/10/2011 15:40

Just a question.

How do you react when you are continually not being understood, say by a teacher, a school, an LEA, the NHS, GP, SALT etc.
It is the same for us but just multiplied by our various disabilities.

StarlightMcKenzie · 03/10/2011 16:37

Dolfrog I work harder at it until I am

Becaroooo · 03/10/2011 16:43

I do wonder about that dolfrog

He is better than he was, but sometimes he seems in a little world of his own...he asks a question, I answer it (to the best of my ability) and its almost as if he isnt paying attention/doesnt hear me. So he asks again. And so on....

Think I need to try and find other ways of communicating with him that means he finds it easier to process what I am saying - he is supposed to be being assessed by the STS soon so maybe they will have some suggestions??

Becaroooo · 03/10/2011 16:44

"more ds friendly"

I like that description DF !!

dolfrog · 03/10/2011 17:09

StarlightMcKenzie

"I work harder at it until I am "
Aren't you the lucky one not to have a disability to live with everyday. You are able by just working harder to achieve your goals. Not possible for those who have cognitive barriers.
So for those of us who have these types of disabilities we need everyone else to communicate at our level, which seem to be asking the impossible from those who have no disability at all.
Well they do have one disability the lack of ability to understand the needs of those who are different from themselves and have a disability, and behaving as if the disabled can be just like them if only they just try a bit harder.

StarlightMcKenzie · 03/10/2011 17:19

Dolfrog. I gave your specific question and specific answer.

But on a more general level. DS has to know what behaviours are dangerous to act out in public. Which ones will get him ignored socially and which are likely to wind people up so much he'll get hit, possibly killed.

dolfrog · 03/10/2011 17:29

StarlightMcKenzie

All our children who have some form of disability will require lifelong support, and others need to understand how we are and what our support needs are.
You and others seem to be in some form of denial of these life long support need and have this delusional concept that we can live independent lives, or that if you throw enough money at the problem you will find a magic cure.
You need to accept that you may have to be a life long carer, which come as part of the package for those in families like ours. You have to understand our limitations and our strengths which vary from individual to individual.
You will have to educate society, not DS, of his needs so that he is not ignored socially, you have to educate normal society to understand the safety needs he may require.

StarlightMcKenzie · 03/10/2011 17:34

Don't be so blardy insulting Dolfrog. Show me one thread where ANY poster has implied that throwing money at their child's disability will remove it.

I may well have to be a life-long carer but however much I might not want it ds is likely to outlive me, unless of course, he gets killed or kills himself for having inappropriate social skills.

silverfrog · 03/10/2011 17:39

oh fgs, dolfrog. get real. the world is not going to change for my dd.

that does not mean I do not accept her. or moderate my language and behaviours around her. nor does her disability mean she is unable to moderate her behaviours and language.

and it is not appropriate (or, actually, necessary) for her to say "what is for lunch" 100 times before breakfast. funnily enough, by moderating my responses (as I set out in my earlier post) I have helped her to learn how to:

deal with her anxiety about what is for lunch
learn that she cannot get her questions answered NOW and every minute for the next 3 hours
that living in the real world is a give and take procedure - I do not exist to answer her questions (and nor does anyone else). I do, of course, answer reasonable questions, and if the reason for her repeated answer is that she does not understand, then I do not simply repeat myself (which would not really serve a purpose, would it?) but instead moderate my reply. if her reason for asking repeatedly is to wind me up (she is, after all, a 7 year old child - she is as capable of mischief as any otehr child) then she gets ignored. if she is doing it out of anxiety, then I help her deal with that anxiety.

none of this is 'throwing money' at a problem. it is helping dd1 understand the way the world works - people are not here to respond to her every demand time and again. we are not here to serve her every whim and fancy. we are all here (her family, adn her peers, and her teachers etc) with out separate roles to play, and she has to respond accordingly in various situations, as does every other person in the world.

my expectations are not too high - she has gone from only having repetitive, echolalic language to being able to hold short, useful conversations. she has gone from asking me the same question over and over (her most recent example was 'what time is it?") to asking appropriately.

not helping her do this woudl be doing her a massive disservice. I know I will be her lifelong carer - but who will do it after I am not here? because whoever ti is will not have the unconditional love that I have, and will probably have a whole lot less patience.

dolfrog · 03/10/2011 17:50

StarlightMcKenzie

The inappropriate social skills are only inappropriate for those who do not understand the nature of the disability, and it the ignorance of others or normal society which causes the suicidal tendencies. most of us have these tendencies as we feel unaccepted by the so called normal society who will not accept us for ourselves but expect us not to have a disability 24/7 and be just like them. And you seem to go along with this.
All my children have a disability, which both my wife and I share with them, and we know that our disability is always there, and we will not be able to be normal so we have to get society to work with us to understand OUR needs as we are the ones who need help and support, from the more able normals.
Throwing money at it, magic cures, magic programs, magic diets, threads trying to avoid the reality of coping with the daily life of living with a disability.

justaboutstillhere · 03/10/2011 17:58

This reply has been deleted

Message withdrawn at poster's request.

StarlightMcKenzie · 03/10/2011 17:58

The only thing I go along with dolfrog is giving my children as wide a number of choices and opportunities in order to give them the best chances of negotiate their way through a cruel and intolerant world. You would not be able to write the post you do, or run the charity you do if you hadn't been taught the English language, the common language of the society that you operate within.

It doesn't mean that you have to pretend it is easy for you, or that you don't have a disability. My dad preferred to wear a large hearing aid on his ear rather than a discreet internal one to flag up his disability and show people that they needed to accomodate his disability, but he didn't refuse to wear one at all and demand that the whole world learned sign language, including himself as he didn't know it when he became deaf. That would have been insane. He did however, encourage his students (he was a teacher trainer) to learn as much sign language as they trained.

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