New parents/family and down syndrome

[devientenigma]

why does everyone always feel the need to bring on the positive stories?

[cansu]

I suppose it's survival really. When you first discover something is wrong with your dc the last thing you need is the worst case scenario. If people had told me some of what I now know about ASD I seriously doubt I would have got through diagnosis. I avoided reading about ASD and finding out about things until I had to initially. I suppose in al honesty it's why I try not to think much about ds future as an adult with ASD. Knowing how bad it could be wont help me much now.

[devientenigma]

yeah I see that, it's why I always try and get in 1st post with something neutral, still makes me foam when I see the positive, this is your life. Never mind.

BTW I will answer your PM when I am not annoyed x

[Dev9aug]

What Cansu said.

[AgentProvocateur]

I rarely post on the SN boards, because when I did once, under another name, post negatively about my childhood with a sibling with DS, I was more or less accused of being a heartless cow. And I was told that things are much better for people with DS now. That's not the experience of the patents I know.

[AgentProvocateur]

Parents

[cansu]

I was thinking about this a bit more and I also think its also because those without the positive stories are either
Too depressed or pissed off to post their stories
Putting up a good front (know that I do this for work colleagues as who wants a pitying pat on the back with a "I don't know how you do it"
I also think people having an awful time tend to stay in and are pretty invisible to society in general. I must also say that the portrayal of Down's syndrome is perhaps more positive than ASD with an image of happy sociable people with disabilities who everyone adores. This must be pretty sickeningly irritating when you know the reality for some people so you definitely have my sympathies. I used to get irritated with local sn play schemes who I felt had no idea what my ds was like. They used to ask me if he was interested in cooking FFS. This was at a time when the only thing that interested him was watching the same ten seconds of a video about one million times a day. Anyway rant over but I feel your pain.

[Dev9aug]

When ds1 was first dxe'd, I read mostly positive stories. did that mean that everything worked out for us, No.

Did it help me at the time, enormously.

[cansu]

I also think there are very few places where you can be honest about your feelings about disability. I have a close friend who has similar feelings and views and she is one of the few people I can be open about it with. With professionals I keep a wary distance generally and even on these boards the overwhelming issues are about battling the system. I have done my fair share of that and continue to do so but I think it does lead into a kind of everything can be overcome mindset. When of course it can't.

[Perspective21]

Have just posted reply in the original thread re newborn. Sorry I think I have infuriated some of you. My intention was to help, to advise, not ignore any negative feelings the family may be having. I wanted to explain how things can turn out well. Although never simple! But a newborn baby's parents aren't ready for tales of frustration with DLA etc, that will come later!

[Dev9aug]

That's not to say that we are not prepared for any negatives, but I am of the mentality.."we will cross that bridge when we have to".

[devientenigma]

thanks everyone.

I agree Perspective they are not ready to hear everything which is why I try to remain neutral. Your rosy post has even told the OP that this will be her nephew! Not just your personal positive story. As for a newborn baby's parents in my case I was worried whether my son would survive. It was very much touch and go. He had been resuscitated quite a few times. However that was just the beginning. So no, not all struggles and fights come later.

Now 12 year on with more than enough of my fair share of fights and struggles I try my hardest to drum it in to remain impartial. 12 year on things have not worked out well, not just medically either.

[Perspective21]

I did not mean to preach or cause offence or be overly, naively positive. My son was 3 wks in NICU and we had and still have health issues to deal with. It was just my view, a personal view, that's as uncomplicated as it was meant. I'm thinking I may resign from these boards, have until now found it supportive but now feeling I have unwittingly entered into a strange competition of whose tale is worst! I am sorry for your struggles, I couldn't imagine dealing with so many additional needs .

I too have had difficult times, was trying to be balanced, not preachy.

[devientenigma]

Now leaving is the last thing I want you to do, however I do feel it wasn't balanced as you did say it is her nephews future.

Anyway there is no competition, I just felt you were trying to make out like I didn't know much about having kids entirely.

Our life isn't supported at all by anyone, it is damn hard and no one wants to know the extreme of it all. Something that keeps me prisoner in my own home with a lack of friends.

I also did not want to post on the OP thread, hence why I opened a new one. I did see your post and saw red. I was going to take this through PM but the computer keeps playing up.