What do you say....

[eidsvold]

I was waiting at the customer service desk and a woman came up to Dd ( sitting cutely in the trolley) and began chatting to her and smiling and asking dd for a smile. Often have older ladies ( middle aged etc we know the type) smiling at dd. I felt smug ( really not the word I want but will do) that she felt my dd was gorgeous enough to chat to!!

That quickly changed when she said to me - I love these children ( emphasis on the these) They are always soooo HAPPY!! and then she walked away. I was so stunned and brought down to earth with a thud. Despite common generalisations - Dd is not always happy - in fact she can cry and shout up a storm. She just does not really do it in public yet.

As I walked away I thought I should have said - what children?!?! and felt disappointed that she stopped to say something to dd because she was one of 'those' children. I surprised myself by how annoyed I was at the woman......

A couple of years ago I went shopping at a very posh farm shop to buy something special for a fancy dinner party.

Having made my purchase, I walked my rather peculiar walk toward the door out to the carpark. A woman suddenly grabbed my arm (nearly pulling me over) smiled sweetly very close to my face and said
"I don't think you should be going out there. There are cars out there. Who are you with? shall I find them for you?"

I tried (and failed) to recover my composure, and said quite tartly I'm afraid
"Madam I am here on my own. I am going out there because that is where I parked my car. Now, if you don't mind I am going to drive home to cook a three course meal for my husband and son."

said woman stood with mouth wide open, and I left. I was (unreasonably) livid with her, for reminding me that I am so obviously disabled. 2 years later I know she meant well, she just didn't think.

Easy...I know what angers me is the natural assumption that we ( dh and I) would terminate - not possibly thinking that we would want a child with special needs... and in a professional situation that woman was not right to say something like that - if 2under2 was to ask for an opinion or explore her options - fine but that is unsolicited, ignorant of the situation and very much unnecessary.. I wonder if she would have said that had 2under2 had her dd in the room?!?!

I don't want to offend anyone and I'm probably in the minority here, but if I could have known that my son would have severe autism I would not have had him. And I DO adore him, I'd love to know him with his personality without autism. Its not because of how hard MY life is (although you wouldn't know that reading B&D thread ) but I think life for him is confusing and difficult and god knows about when we're not here..... I thought Easy's posts were interesting and good to hear a different angle. With No 2 we did have the option of finding out the sex (autism 4x in boys vs girls) and our Prof would have supported termination of boy if we'd wanted on basis of psychological issues etc as autism can't be identified in-utero (or for years after by some Drs ). We didn't find out though but we seriously considered it, and out popped a girl! Still not end of worry as I have a sister with aspergers but very encouraging so far. I have asked firends with DS kids if they knew beforehand but not because I think they shouldn't have had them as I really don't think that, just out of interest and to get to understand them better.

TBH whether or not to terminate isn't a decision I would like to take. Like eidsvold its the assumption that you would that irritates me.

Would I change ds1? I'd give him language if I could because then I think his life would be so much easier. And I'd love to know how he sees the world (maybe I wouldn't I suspect it could be terrifying).

easy I am sorry you've had such a difficult time and stupid comments to endure. I think most of us parents of children with SN are very aware of teasing etc and what it might mean to our children. I always feel that my daughter is not disabled by her extra chromosome but rather by other people's attitudes - I've seen some great documentaries on adults with DS who campaign for more rights etc and how fed up they get with being patronized by people. As for the teasing, both dh and myself were teased badly at school - dh for his home-made hairstyle and clothes, myself for my big feet (crazy, huh?). I came to England from Germany to do my A levels and experienced terrible xenophobia at school - got spat at and hit for being a 'Kraut', endured blatantly racist comments from teachers and to this day still hate the whole public school scene. Anyway, what I am trying to say is that people get teased/treated badly for all sorts of stuff - of course with most it ends when adulthood starts. My main problem with 'therapeutic' abortion is the whole aspect of whether a life is worthy or not... it just smacks of eugenics, particularly the fact that you can terminate up to 40 weeks if the baby has something 'wrong' with it.
I read an article a while ago about a chap with achondroplasia (sp?), which is the most common form of 'dwarfism', who is a geneticist at Glasgow Uni and very much in favour of prenatal diagnostics and termination because he now has a lot of health problems as a result of his condition. Your posts very much reminded me of his article. I don't really know what to say/think - other than that I hope my daughter will have a happy life and that I try my best to make society accepting of her and others. I find termination for medical reasons so difficult to get my head round because the general message it sends out is that it's ok to dispose of those who differ from the norm and that they are worth less than 'normal' people.

I wonder if the Glasgow man is the same one I saw on Any Questions recently? Just remembered, sort of, his name, its something like Tom Shakespeare. One of the main topics of that prog was "cleansing society of the disabled/different" and he was wonderful on that subject and all the other topics. He was very funny and clever and I thought he should get Dimbleby's job! Not because he had a disability at all but because I forgot about it completely and just enjoyed watching him.

2under2
Thanx for your response. I don't think my life is worth less than anyone else's (in the case of some, it's worth much more), nor do I think that many other people have regarded my life as such. It is simply that Life even with all your faculties be they mental or physical, is bloody hard. When you don't have a full set of anything (working arms, legs, mental reasoning or whatever) then it is exponentially harder. Putting it simply, I would choose to save putting another human being thru that.

BTW I don't regret my life, I've been successful in my career, travelled the world and have a beautiful son to be proud of but I wouldn't criticise anyone for terminating an abnormal foetus. It is credit to you that you have the strength to face the trials that your child brings you along with the joys. But I wouldn't get on a soap box saying "all life is sacred".

Davros, sorry to stray into your thread, but can I say I find it reassuring to read your post. I feel bad for saying I would terminate (early) for severe disability and for Downs. I KNOW I would love an SN child as much as my son, but as my dh said, "I would love them as much as my other children, but what would happen when we weren't there to care for them?" It's a bigger issue for us than some others as we are older and thus more likely to leave any future child when they are comparatively young. My dh is a good man and the most hands-on, adoring father you can imagine, but I agree with him. I am glad it is note merely the position of someone totally ignorant of the issues. Of course, if scans/tests etc didn't show up a problem and I had a child with, say autism, I suppose I'd do what anyone would do. Learn as much as I could, fight as much as I could and help as much as I could, hope as much as I could and love as much as I could. That isn't to say I thought that scanner was right. I think it was a terrible, awful and outrageous comment to make about a living, breathing child. Absolutely shocking. I would also complain.
Thinking a lot about this due to the various Mumsnet threads at the moment. Enlightening, but also saddening.