If you have a child with DS, please can I ask you some questions?

[BrownPaperandString]

We have been told we are very high risk for DS and I am not keen to undertake CVS or amniotic lightly. I am also feeling overwhelmed with the fact that I have to make a decision that will effect the whole family. So, we will only do invasive testing if we would terminate but I am very reluctant to even think about that unless I need to be 'big enough' to consider that.

My questions are awful and down to my total ignorance and I really don't want to offend. My heart is in the right place but I just need some help. We have 2 young DCs.

1. If you knew when you were pregnant what you know now, would you terminate?

1. Do the non DS siblings lose out greatly because of extra appointments etc

1. Bearing in mind the uncertain provision for adults with DS, is it unkind to knowingly bring them in to the world.

Can I start with those and ask more later? I think my concern is for teens and adults with DS - from their point of view not mine.

Thank you so much and I am so sorry again at the awfulness of my questions.

I have a cousin with down syndrome (not a downs syndrome cousin)

She is 19 now. Went to main stream primary and secondry schools with a one to one aid has she is deaf. The aid was more for the teacher than her though as she could lip read perfectly but the aid had to relay back to the teacher what my cousin was saying. She is very confident, always has been, the life and soul of the party, very popular with many great friends. She did her gcse's with specialist help and went on to get better grades than I did.

She is now in college with a part time job in a fast food shop keeping the eating area clean and is leader of childrens parties.

She has her own little flat in assisted living and the only thing she really needs help with is cooking and cntrollng the hot water temp. (She tends to forget to add cold water and will try to jump in the bath/t
ry to wash dishes before checking the temp)

No boyfriends has of yet but she's more than happy with her life right now.

She did have a very hard start to life, especially before we realised she was deaf. She is the eldest child too. Her younger sister didn't ever feel sidelined I don't think . Possibly because she had always grown up with a sister with downs syndrome.

Personally, we refused testing both times in my pregnancies. I already knew that it didn't matter what the outcome, I was keeping the baby.

I understand that my cousin's quality of life is individual to her but I just wanted you to know that a child with downs syndrome can still go on to have a very fufilling life with the right help and guidence. Like any oher child.

Thanks Cat64 and lifeas3plus1. I think my final conclusion from listening to all your really informative stories and from talking to the lovely lady at the DS society is - that every disability that a child with DS can have is not specific to DS and can be going on with anyone. e.g. deafness - that could be caused by any number of things and presents its own difficulties that can be overcome with appropriate help / equipment.

Having heard lots of stories now, rather than just a very small handful, I do feel totally reassured that people who have DS are actually, dare I say it, no worse off than the rest of us and have an equal shot at having a healthy, happy and secure life as everyone else when they are born.

Thank you so much everyone and sorry again for any offence that i have caused.