"Proressionals" need to change the language they use re: our children

[mamadadawahwah]

have you ever walked out of a doctors office and felt depressed at their use of negative language regarding your child?

There are moves afoot by organisations trying to change the language the medical community uses. Instead of using words like "lifelong disability" and "forever" an approach called NLP (neurolinguistic programming) works to create positive speak, which has been shown to get better outcomes.

I know we tried it our own house. Instead of using sentences like "dont cross the road" we say "stay with mommy". Its been proven that children dont hear the word "don't", all they hear is "cross the road".

Words and their meaning rest in our subconscious. So when a doctor says " i am sorry but your child has a lifelong disease or disability, or what your child has is "incurable", a parent can feel very overwhelmed.

I dont know a lot about NLP but it makes sense to change our language. Hope is never false. There is no thing as false hope. Either there is hope or there is not hope. And if you have hope, you work towards it. Doctors arent too good at giving parents hope for their children who have difficulties.

It comes from their training, "dont lead the parent down garden paths", etc. Or they think hope is too expensive or the parent isnt capable of finding hope.

In terms of autism for example, the difficulty i know most about, there is much hope, but you dont hear about it in this country. All you hear is "special school", possible institutionalisation, respite, unemployable, never get married, never never never never.

Ha, talk to parents in other parts of the world who are treating their children for autism and you find so much hope.

Autism for example, is exploding. The children being born today in hospitals all over the country who will develop autism is very hard to think about. Special schools are at this minute, being built for them.

Things to do, so little time.

My doc has always been straightforward. dd has severe spastic quadraplegic CP and will never be able to function indepedantly. No jargon is going to dress that up or get her walking or even gain the function of one hand.
Nor is seeing it as a'challenge' or whatever the current PC-speak is. Its crap, it always will be and she will have to make the best of it.

Good special schools seek to help children fulfil their potential. For some children these school will be better at doing this since they are more likely to have the appropriate equipment, staff and staff training and very often a better ethos in place.

All children, not just those with special needs, need schools which allow them to flourish.

For some children with special needs the very best school will be a special one. Closing special schools is a masive mistake, and it further disadvantages children and families who already have more than enough to struggle against.

We do have hope. That's why our children are living with their families, attending school and being encouraged to try new things. It doesn't matter how the professionals speak to us, after the first shock we all have some hope, otherwise we would lock our children up in institutions on the day they were diagnosed. Must be human nature I suppose! Tbh I'd rather not have people patronising me with their pc talk but that's just me - awkward .
Also, we've recently had a thread on here about people being fed up with friends and relatives who try to pretend there is nothing wrong and that their children will 'catch up in their own time' etc. They didn't like the fact that being 'realistic' was often seen as being 'negative' by others. I don't think we can really have it both ways.
I do agree though that there are instances where the professionals' doom and gloom is IMO out of proportion. We have seen examples of that when people are told their children have Downs Syndrome. From what other posters have said, the information given out (leaflets etc) are very one-sided and only give a negative viewpoint.

I agree with everything everyone says.
I am a specialist salt.
Using a small example, we never talk about a child's 'strengths and weaknesses'. Rather, we say 'strengths and needs'.

Seems trivial but it really help people to think more positively.

It is crap Need,I know it's crap. But your child can still have a good quality of life full of loving people, interesting experiences and intellectual challenges. That is not an impossible dream

I never said using practical language stopped me (or anyone) loving their child or putting them in an institution and geting them the best quality of life they can.
I just hate false hope and dressing things up to make them sound better. Hence my loathing of 'challenges'. A challenge is something you can overcome if you try. A disability is not a challenge, its a fact. All the optimism in the world isn't going to get dd up but dressing it up as 'challenge' makes it sound like she ain't trying hard enough.
I like straight talk and real scenarios. Can't bear beating around the bush or dressing things up and I'm not into PC-speak either.
If poeple ask, I say straight that dd has severe CP, will never walk or talk but so what? She's a person and is who she is.

Oh I so agree. We had DS2 assessed developmentally recently, and we know there is a problem, but did not expect to hear what they told us.

They told us he is severely developmentally delayed, at the level of a three to five month old (he is 10 months) and that he will need care for the rest of his life.

We were devastated.

BUT not all tests have been done yet! And there have been no life events either before he was born or after to indicate he should even have a problem

We have decided to prove the "dr" wrong.

We think she should have told us that yes DS does have a problem or "issues" (which we do agree are there) but how you can tell someone that their 10 month old will never lead an independent life, may not walk, when not all investigations are complete, is beyond me.

Very unprofessional.

We are going to surround ourselves with positive people and we are going to work with DS so hopefully he will reach his potential.

Once we "know" more about DS I am seriously considering making a complaint about the ped. I would not wish what we have gone through on my worst enemy...

MM that is dreadful.

In my experience, paeds look at the medical facts only and draw conclusions from these.
They make predictions about day to day activities which is wrong as they will not be the ones there helping the child to learn how to walk/talk/eat independently and so on.

I have had so many parents tell me they 'want to prove the doctors wrong.'

Need,the WHO talks abour disabilty, impairment and handicap in a very useful way.
Someone can have a minor disability which impacts hugely on their life causing a major handicap or the other way round.

I know quite a lot of folk who fall into one or t'other of these categories.

The physio from the assessment team is supposed tomorrow to come for a home visit to talk about the "feedback". I don't if I should tell her not to come or not - she can't tell me anything new, and I am sure she will just reiterate what her consultant said.

I am also supposed to see the GP on Thursday to "talk about" things. As far as I am concerned there is nothing to talk about yet. DS has had tests, but nothing new is known yet. I may want to talk to him when we know more when results come back, but he is not positive about the situation, and I after I saw him last time (Friday afternoon) I was a mess till yesterday afternoon because we were speculating about when / if the consultant will tell us more. He is also going to go through the feedback notes and phone the negative consultant.

Do you think I should the physio and GP? They have nothing new to tell me (in fact I know more up to date stuff about DS than they do), neither are positive, and I am likely to get very upset....(don't want to get upset again till we know something definite).

I would keep all channels of communication open,if only to tell them you are not happy with what you are being told/how it is being said.
Can someone be there with you?
Also,try listing your comments/questions beforehand which will help you feel more in control.
You could even just pass them on silently.

Worth a try?

Thanks Moondog. I think I will see what the physio has to say and then decide tonight about the GP.