Ignorant/Infuriating Guardian story

[eidsvold]

Anyone else read the 'confessional' in the guardian magazine today???? My dh saw it before I did and suprisingly he felt compelled to write to them to provide a more positive view.

Basically the story is about a woman who decided to terminate her pregnancy as the baby was shown to have downs ( amnio) and a heart defect. So you can imagine how that went over in our household. Some of the info told to her by medical professionals was appalling in terms of ignorant and ill informed. Whilst I want to feel sorry for the woman - I can't.

I am in the process of reworking our family story to send to the Guardian in the hope they will think about what they have written and be prepared to provide a more balanced view.

Even sadder to note that next week is Down syndrome awareness week - Good onthe guardian for helping to break down stereotypes and stop misinformation!!!!(NOT)

Feel free to join us in writing in to complain - if you get to read it.

Hi Fio2 - look I don't want to be rude, I'm just worn out already today - if you can't understand why I'd be upset that child who may be a bit slower than others but in every other way is a perfectly normal, healthy child should be labelled 'SEVERLEY disabled' and 'a burden to society',then I'm really sorry but I can't be bothered to go into it all again. Maybe read the threads here and try and see it from my/our point of view. That's all the explaining I'm prepared to do, I shouldn't really have to explain / defend myself any more than that. If you still don't understand that children with a huge variety of special needs shouldn't all be grouped together and labelled as disabled then so be it. I just don't have the energy to defend me / my daughter agin today Fio2, sorry.

Eulalia - I must agree with you. I don't have much sympathy either. I mean at 23 weeks the baby could've lived!! How horrific.

Thomcat - you don;t need to defend your beautiful daughter and her right to live. That goes without saying.

Uggghhh M2T - Why can't people understand that Charlotte isn't disabled. She get's around the floor in her own way, copies all my sounds and gestures, kisses people, blows kisses, feeds herself, basically does EVERYTHING any other 18 month old does, she'll just be a bit slower at learning to walk, at learning to talk MAYBE, she'll be a bit slower at school but there's every possibility she'll get her GCSE's, get a job, live independantly, the way she's getting on now that's all very possible, but if that isn't the case she still won't be DISABLED, she'll just have DOWN SYNDROME. Uggghhh, I loved Mumsnet yesterday but today it's wearing me out and making me sad to think that's how some people out there will view by daughter - as disabled!

THomcat - don't know if I've told you this before but we have a man at my work with Downs Syndrome. He has worked with the company for more than 10 years! He's happy.... loves what he does... stays in his own flat with cable TV and a home PC which he is obsessed with. He has an enviable knowledge of current affairs and an immense knowledge of the first and second world wars. He reads novel after novel about them!! He is on my bus in the morning.... makes his own way to and from work.

And he's the happiest person here!! He sings all the time and gets into trouble quite alot for gabbing to EVERYONE about football.

I don't think he's disabled at all and once people get to know him they don't label him either! He's very spoiled though and gets 2 holidays abroad each year with is parents and younger sisters.

He also talks quite openly about his condition and all the nastiness he's come up against. He doesn't let it bother him.

Thanks M2T, so pleased not every one will feel it necessery to label and pidgeon hole SN people. It's such a shame that not everyone can see Charlotte as Charlotte, a person in her own right. A person who may need a bit of extra help in a few areas, ie has special needs. I guess when people get to know and meet Charlotte they'll soon realise that to just label her disabled would be wrong. Love Thomcat xx

Thomcat my daughter has a global development delay and I personally dont care if she is called disabled or not I have never found the LABEL disabled a nasty word just because I have asked you a perfectly innocent question I am not meaning to be infuriating

plus I have not said anything about people with DS being disabled

Fio2, Well that's great you don't mind the word, it'll certainly make your life easeir not minding, but unfortuantely for me it seems(!) I don't want Charlotte to be labelled as anything other than Charlotte. You didn't really infuriate me, I'm just worn out today, like I said. I don't want to fall out with you, or anyone. You don't mind the the word disabled being used when people discuss your little girl, I do, let's leave it as that, OK?
PS I don't know much about global development dealy, if you ever feel like it I'd be interested in understanding a little bit about it.

yes I'll leave it at that and stop asking stupid questions in future!A global development delay is when a childs development is slower than that of their peers for instance dd didnt walk until 22months instead of the average 12-18months. It is called global when it is all areas of the childs development. But saying that my dd is age appropriate for social and emotional development and play skills. A global development delay is just a term to say slower I suppose but there a varying degrees mild to severe etc. Also if a child has got a delay in any area of development it can indicate a medical cause or syndrome so further tests have to be carried out but to no avail in our circumstances . The diagnosis is she has a learning disability at the moment dont know if it will get better or worse.

I hoped I have explained it ok and sorry again

Fio2 - I just saw you second post, I didn't say you did say anything about pople with DS being disabled. You asked me why I minded Charlotte being called disabled. Ohhh I can't cope with this today. Why are you being all defensive? As I said lets just leave it as you don't mind the label, I do, and there's no problem, I can't bear all this to be honest. You seem all upset with me and all I'm doing is explaining myself, in a tired, worn out way, as you asked me to. Charlotte is teething, flights to my holiday destination are being cancelled, work is too stressful for words and it looks like you and I are having an argument that isn't neccessery. Please lets not go there, there's no problem with us having different opinions.

Thomcat I am sorry

oh Thank God we're friends again! I can't bear things alike that and couldn't get on with my work until it was all OK here!! Right I have to get on now, glad we haven't fallen out, and like I say if you ever feel like educating me a bit about global development delay I'd be interested to know more. Have a good day - Thomcat x

I have explained its down there under your message he!he!

thanks Fio2, that message wasn't there before, that's a Mumsnet delay thing mucking us about. Thanks for taking the time to explain about your little girl. I hope things get a lot better with her learning skills. I REALLY have to stop now and get on here, this Mumsnet lark is so addictive! Big hug - xx

Phew, have just come back from holiday, DH found the G articale that started all of this last night, and I mentally composed a letter on the tube this morning - pretty much what Eidsvold wrote. Two things - how great to come in and find gut reaction echoed hundred times over on this board - and how sad that some people seem set on disrupting what this board is about. It's a SN board, and altho there are no rights of admission, a basic respect for the feelings of regular users is a given isn't it? Oh, and despite writing a rational letter to paper, if that woman ever tries to come up to me and my daughter and 'apologise a million times' or whatever nonsense she wrote, I'll give her a piece of my mind!!

it's interesting to hear different views on terminology. I must admit I do describe dd as disabled sometimes though I guess I generally try to say she is developmentally delayed because saying she's a disabled child just sounds a bit demeaning. Like saying a disabled car, traffic light or whatever. Though really it's not something I usually mention to people because it's none of their business - we moved house six months ago and have left our (very nice) neighbours to just work it out for themselves (dd doesn't have very strong DS features so they're probably still wondering what's up with that little girl next door! ).
What really gets my goat though is people calling her a 'Downs' (used to have a physio who kept doing this - ended up ditching her) or saying that she 'is Downs' or a 'Downs girl'.

See I'd rather say to people Charlotte is Down's then call her disabled. Disabled is such a huge umbrella word and means nothing really, it's so general. I'd rather people refer to Charlotte as Charlotte and if they have to use anything else to refer to her as anything else, they can say the little girl who has Down's. If anyone just called her 'the Down's girl' that would be rude though, it's a bit like refereing to someone as 'that fat mum' or 'that freckled faced woman' etc!!! It's interesting to hear you refer to your little one as disabled as well though, maybe it's just me that has a problem with it! oh well each to their own aye, at the end of the day first and foremost they are our beautiful kids and we love 'em to pieces, no matter what we call them! xx

I say penny is developmentally delayed but some people just dont understand what that means I said to my friend do you think penny is disabled and she said no penny has got special needs. I suppose I shouldnt say she is disabled but sometimes thats easier than having to explain everything to people you dont know that well. When there is no diagnosis, no syndrome just a big question mark as to what is going on it is more difficult to explain to the clueless. Really though we should just tell people to mind their own bloody business.

I have to be honest and say that I refer to dd2 as disabled as well at times, but don't really like doing it. As Fio2 says, sometimes it's the easiest way to explain it to those who find it hard to understand. My dd2 also has global development delay, age just 2 and not yet crawling, walking or talking other than mama. I generally tend to say she has learning difficulties but often don't say anything unless I feel I have to.

I say it too, but I do have to take a deep breath sometimes and hold back the sobs. I think it just depends on your viewpoint, and/or the length of time you have had the news to come to terms with it. Some days I can say it like reading an autocue and it has no effect, other days the depth of what I am saying makes my heart sink into my stomach. And I still get very emotional using a disabled parking spot.

Oi lou, you were up late last night!!

As always Thomcat!