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

[HecateGoddessOfTheNight]

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.

And dolfrog, how dare you suggest that anyone is trying to avoid the reality of living with a child with a disability. You know nothing of our lives, of our children or of our financial circumstances to have any right to make such judgements.

I honestly don't know if I ought to be rude back to you, or whether your narrow-minded, inflexible subjectivity is down to your disability and should somehow be accomodated or ignored.

silverfrog

"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."

we have the same issues.

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

WRONG
only if we we do nothing.
We need to make all aware of the support required for all children who have disabilities, who become adults with the same disabilities but may be with a few better coping strategies.
If i took your attitude i would not have founded APDUK back in 2002 to create an increased awareness of my own APD, and why I spend hours researching APD and related topics so that others can help understand both my disability and the related disabilities. So as I have found out we have to defeat the ignorance in the health support services, the education system (very important as this is how future generations will view disability and people like me and your DD).

So it is about going out there and telling all who will listen (difficult for APDs) and help spread a better understanding of all the disability issues.

OTHERWISE society and institutionalised Disability discrimination will continue, and our children will not get the help they need when we are gone.

And you would make a great disability advocate.

StarlightMcKenzie

your narrow-minded, inflexible subjectivity is down to your disability
please explain, not one of the traits of a visual-spatial learner who has to see the overall picture to understand things.

dolfrog I honestly can't explain your rudeness then. I thought perhaps there could be a link into difficulties with rigidity of thought but you seem to think not.

I do think this thread title is quite apt for how it has turned out however.

quite frankly, dolfrog, if I took your attitude, my dd would still:

eat only raisins (after all, her disability meant that was the only food she wanted)
not be able to play with anything (after all, her disability meant that all she could do was scratch the wall until her fingertips bled)
not be able to talk (after all, her disability made it difficult for her)
not be toilet trained (her disability meant she found it very hard, and preferred to use nappies)
not use cutlery (her disability meant she found the coordination of cutlery hard, and preferred to use fingers)
scream every time she did not get her way (her disability meant she had impaired understanding, and so everyone else had to give way to her)
monopolise me to the extent that I was ot allowed to talk to anyone lse, ever. at all (her disability meant she was so insecure she needed me, after all)

and a whole list of thigns - I could be here all day.

my job, as her mother, is to make sure (just as I do for dd2, who is not-quite NT) that she has the opportunities to learn to the lbest of ehr abilities. in all things - in language, in social situations, in play, in attitude and how the world works. to do anythign else woudl be to sell her short, imo.

none of that means I do not accept ehr or her disability. or that I throw money at everything to make it better (ironic, given my other thread!). none of that means I do not expect the world to accept elements of her disability. but I cannot expect the world to accept her pooing in the middle of the M&S cafe, and I cannot expect the world to accept her screeching at every minor perceived slight on her part, and I cannot expect the world to accept her idiosyncratic use of language. and she has the ability to learn - why write her off? why leave her to be the odd one out? the one not-quite accepted? she has enough of a mountain to climb already.

silverfrog

quite frankly, dolfrog, if I took your attitude, my dd would still:

WRONG again.

I am not against providing the best help and support, whihh you want to provide. But there is a difference between forced compliance to a societies expectations,m when that society has no understanding of the nature of any invisible disability. Research both our own as parents and from sceience can help provide the support our children need. But all have to understand the nature of our disabilities, the limitations they impose on us, how we can or can not compensate for our disabilities, and how society can best educate themselves to understand our needs. We are only able to compensate for our disabilities for some of the time if we are lucky, some never get that far. But all need to understand us to help us be part of the wider society.

Gosh, tentitively stepped back onto the SN boards to what I thought was a jokey thread, and found it was not :(

In answer to the Op, DS2 does the same. On a night time before bed I get "who in the morning" to which I usually say "School" or whatever else we are doing. His repsonce is always "and then" which can be asked over and over and over again. He wont stop until I tell ask him "no more talking". Gets very tedious.

don't try to wriggle out of it now, dolfrog.

you have all but accused Starlight and me of denial over our children's disabilities, and searching in vain for a 'miracle cure'

you cannot backtrack now and say 'oh no, I meant that if you were to think like that you would be doing your child a disservice'

your posts earlier suggested that saying to a child with ASD and an APD (a likely co-morbid) "I have answered that, and the answer is still the same" is pointless. I can tell you from my experience with dd1 (and Star has said the same for her experience with ehr ds) that it is not.

sitting back and sying 'oh, she has an APD. she won't understand that' is patronising, and belittling. I will not let my dd1 be written off in that way.

I have never doen anything except accept her disability and work with her and support her enough to find a way through it. her response times now, for eg, are at NT levels. her language at times passes for normal too. it is achievable.

yes, the world shoudl also do it's part in helping her. and I hope it will. but she has to do half the work to - living in society is always a 2 way thing.

oh, and btw, dolfrgo, shouting 'WRONG' at me does not make it true

The constant repeating of the same question over and over and over and over again is horrid, DS is the same just now and it is really wearing me down, I'll be watching this thread for tips

silverfrog

If you look at all of my posts regarding researched based remedial programs, you will see that i have been trying to provide information about programs that can work trying to find out how they work, for whom they could work and for whom they may not work.
If you back up this thread StarlightMcKenzie asked about threads in general where some where discussing throwing money etc at the problem. Now if you feel that applies to you then, that is your reaction to a general statement, but i was not saying that that was what you had done.

So maybe I am not the only one on these boards who may have a communication disability.
Going back to the denial issue, some go into some form of denial to conceal their own limitations or disabilities which they prefer not to expose. Again another general statement, but not specifically about you.

So may be you should look at the bigger picture which is how i have to all the time, the smaller details is for others.

Starlight - What is a stim?

Or any poster that can explain it to me, I've tried looking online but can't find anything on it.

StarlightMcKenzie

"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."

Self taught unfortunately as they were using phonics at the time, which i cognitively can not use. I am fortunate to have the natural coping strategies for my own disability, (unlike 2 DSs and my DW), and a fairly high IQ, which has enablede me to develop quite a good range of alternative compensating cognitive coping strategies to work around my disability. Running these coping strategies is tiring and stressful, it would be much easier if all would communicate more using graphics charts and diagrams etc, instead of words.

Each child when born is able to learn all languages, but quickly learns the language it is born into and does not develop the abilities requires to learn other languages. And with APD learning to speak can be a problem, and then later real problems with the visual notation of speech, or the written word.

So if you are not cognitively able to use sound based language, which is part of human evolution, we need to go back before speech etc, and use try the form,s of communication humans used before speech, gestures, scent, touch and taste.

It is about continually asking how to communicate and why one form of communication may work or why another form of communication does not work, and to keep on trying alternatives until a mutual form of communication is found. Very time consuming and frustrating at times.

So I am always trying to find mutual solutions to mutual problems, or a two way mutual communication system that works for my and each member of my family, each is different so there are different solution, we we develop together.

IHC, a stim is an uncontrollable reflex/feeling that children with SN have/do. It can be a noise, word, humming, motion such as walking up and down, hand flapping. They do it to get the stimulation or they do it when stressed. Not really explaining it very well, but hope you get the jist of it.

Thanks 5inthebed, would that include constant repeating of a phrase or question until someone stops them? My son does this, constant repeating but far more than a NT child and wont stop repeating until I stop him.

Hi Ihatecbeebies

A 'stim' is short for 'self-stimulatory behaviour'. It is when a repeatative movement or sound is used to stimulate the senses for a variety of reasons, individual to the person, but often to block out too much noise, too many demands, as a comforting reaction to stress, for avoidance, for enjoyment, to combat boredom.

A common one from the NT world is tapping fingers on a table in a boring meeting, or flicking your pen when you are thinking, but they are often easier to control for NT people and you would be able to stop doing it at a job interview for example, no matter how nervous you were.

Yes, thats a stim. Usually they are not aware they are doing it.

Yes, it could be a stim ihatecbeebies. It's really the repeatedness of it. Usually though, they are not dependent on someone else i.e. you having to answer' so it could include an element of control there too, but that could also be for comfort!?

I've got a referal to an educational psychologist at the end of the month, should this be something I should mention maybe? I want to be as prepared as possible.

Yes, it is something you should mention but do you know why exactly you are meeting this EP?

Definately mention it ihcb

DS has a lot of traits of ASD, and in particular very strong Asperger and Dyspraxia traits. He's not been diagnosed and it is affecting his behaviour in school too so it is to talk about getting him assessed.

ihate The EP can make educational recommendations, and assess his educational skills, but assessments for diagnosis are medical, and you would need to get a referral to a developmental paediatrician from your GP, or sometimes CAHMS.

Oh great I thought we were getting somewhere there, the GP refused my referral and said the school had to do it by getting in touch with the EP, but I suppose it's a start as the school keep sending him home at the moment when he gets frustrated so hopefully the EP can suggest different strategies for them to use.