New test for antenatal testing for Down Syndrome

[eidsvold]

Just came across this - developed at the hospital where dd1 was born 5 years ago. IN fact today 5 years ago was when we finally got to bring her home.

not sure how I feel

actually do know

[eidsvold]

kerioke - there was a gap as I had actually been on holidays and unable to access the internet. I then came back and was looking for a different thread as well as catching up on this thread.

[Davros]

I have not kept up with this thread or the general airing of these issues on MN. Partly due to limited time but also because I find it confusing. On the one hand I don't see anything wrong with someone deciding they don't want to have a child with any SN that can be detected before birth whether, like me, they already know what is like, or not. But I also agree that there is a lot of misinformation, fear and prejudice. It is not OK for someone to be knowingly insensitive and disrespectful.

When it comes to the issue of how having child with SN affects siblings, that is something I DO know about. It is complicated as most people look at it as a child with SN being included in a family. That is not always the case and, as many of you know, for many years I had ONLY a child with severe SN, we did not have a family as such and that is a VERY different and difficult, heartbreaking experience. Then there is the issue of how many siblings there are, age gaps and whether they are older or younger. These things all make a difference to how the situation affects siblings and a family.

I know two families very well where there is one sibling with SN and one NT. In these two cases the NT child HATES the sibling with SN, not just because of their needs coming first etc (see Coming Down the Mountain) but because they are often verbally and physically threatened. Then I know other families with two siblings close in age where the NT sibling adores their brother/sister, is proud of them and can't do enough for them.......

Having grown up myself with a sister with AS (although it didn't have a name then) I really fear this situation as it definitely spoilt my childhood to some extent and, even now, is the biggest obstacle in my relationship with my mother. Yes, we can say that if AS had been known and my sister had a dx it would have been different, but I don't know so much, maybe a bit, but she still always came first, was always treated as "special" (although we didn't understand that word in today's terms but it amounts to the same thing).

Having had only DS for 7.5 years and then, fairly unexpectedly, having DD, I can see how it already affects her childhood. She does love him deeply and understands him in her own way. But she can't have friends round to play if he is at home, we can't go off to the park etc after school as we have to be back for him and we can't go with him, she can't use the bathroom half the time because he has messed it up, she gets woken up at all hours by him making a noise and many, many more things that happen because of his SN. SHe loves him now, but I don't want to get to the point where she hates him. She will not have any other siblings (but a kitten for Xmas!) and we do not have lots of family nearby. No, she doesn't know any different, it is her reality, but at 4 years old she already knows that her home life and family are different to those of her friends. I do take her to SN activities where siblings are welcome, but they are few and far between. I will continue to do so and hope she starts to bond with some of the other siblings AND the other children with SN, but her support network is minimal.

[eidsvold]

Davros that is a shame as here in Aus they have a siblings network for those who are nt and have siblings with sn - provides them a space to share their experiences - to be able to have social outings/outlets and to draw support from others who understand where they are coming from iyswim.

Is there nothing in the Uk like that??

[Peachy]

Nothing I have found- I yhave looked for sibling support, some starts at an older age, sometimes thinsg are offered but in a poor way (meetings in schooltime are a particular favourite locally for some reason).

What Daxros posted in terms of how her son's ASd affects her dd is very familiar sadly, I relaise ds1 isn't anything like a ssevere, but DS2 has grown up with a child that cant break routines (so no park on way home), lack of sleep due to ds1's sleep problems, the violence, etc. They are close- perhaps because of only 13.5 month age gap- and I am thankful, although I accept that may not be forever. DS2 was my prime concern with ds3's dx, however ds3 is very different to ds1 and it is far easier to be around him than ds1, as he does not have that underlying anger and destructiveness.

DS2 is in fact the most excited about dc4, indeeed he embarassingly anounced it in class news! We haven't discussed the asd chances with him- in his world, all siblings could be ASD. But we have been blessed that ds2 has a naturally aptient loving and kind outlook, and if this child is NT it would be wonderfulfor ds2 as he grows up, perhaps more importantly as a grown up, to share any care responsibilities he might choose to take on.

[Saker]

Like Davros, I have not posted on this thread and have not read it all in detail, but I have been thinking about it a lot and it has kind of unsettled me. Certainly I would agree that the casual way antenatal testing is sometimes discussed is offensive. I would not agree with termination because a child has special needs and I declined any testing in both my pregnancies. But I feel we have all conveniently forgotten how hard it is to have a child with special needs. We write daily on this board about the problems we face partly due to the additional needs of our children and partly because the system is often a struggle to get through. Surely anyone reading this board with the aim of trying to educate themselves as to the reality of growing up with a child with special needs would be frightened at the prospect. And I agree with Davros on the subject of siblings - my NT Ds1 is a lovely boy and probably more understanding, caring and patient as a result of having Ds2 for a brother. But in other ways he has missed out - he doesn't have the playfellow that you would expect in a sibling just two years younger. There are many things we can't do or can't do as a family because of Ds2. One of the things that would prevent me from choosing to have another child is the effect that it might have on Ds2 who does already have special needs. There is no doubt that he needs a lot of attention and help that a baby would take away from him.

Of course I love both my children more than anything and could not bear the thought of not having them but I can see why, before you have the child and the love that goes with it, the prospect of a handicap can be a scary one.