Hi, can I join you. Feeling utterly stunned by recent diagnosis.

[Bluebirdonmyshoulder]

Hello everyone. Just here for some handholding and support. We recently found out that DD aged 3 months has a chromosome disorder.

We had no inkling of anything being wrong during the pregnancy and this has hit us like I don't know what. We are really struggling if I'm honest.

Also it wasn't immediately apparent that anything was wrong after she was born, we got the diagnosis several weeks in.

Have some great friends and family who are all saying what they perceive to be the right things but this is so so hard.

Bluebird - I do wish I had spent the early years not spending so much time worrying about the worst case scenarios. In our case the worst case scenarios all came true (well the ones I worried about did) but ds1 is a teenager now and the view from here isn't as bad as I imagined a worst case scenario would be. The early years were a lot harder.

So I'd park the worry about not being independent as you have no idea whether that's even a relevant worry. In our case we know now that ds1 will need lifelong 24 hour care, but it doesn't worry me anywhere near as much as it did when it was simply a worst case scenarion/possibility rather than the reality it is now.

I do think learning to park the big worries is a useful skill!

Hi Bluebird, No its not a competition I can't see the point in worrying over something I have no control over.
Alas being an adult is alot harder than having a child.
Dd needs 24 hour supervision and will never be able to live independently .She is mobile but has to have help with everything. and has a mental age of a 2 year old
Shes at special needs collage for 3 years, then we don't know,there is nothing in our area.
Make sure you get as much respite and direct payment hours as a child that you can, because it should be carried over to adult services.Otherwise it is a even bigger battle if you start with nothing.
I do know where you are coming from, it as a huge learning curve,we once went to a talk on special needs and the lecturer said a sn child was like an out of control express train once there was one thing wrong more would follow and this does appear be true
I'm afraid I am a bit to cynical. I do hope I haven't depressed you.
I certainly would not want to unset any parent of a sn child

Hi again Bluebird. I couldn't not post again - I can hear myself of 4 and half years ago in your words.

It took me ages to work through the grief I felt. I would second what others have said about trying not to look too far ahead into the future. I'm a cup half empty kind of person and so my natural instincts are to look on the black side and catastrophise (sp?) everything. Ultimately I found this incredibly wearing and bad for my health . I still don't know if my DD will have an independent adulthood but what I can tell you is that she's achieved far more than I allowed myself to hope for in those early days.

Again, echoing another post - whilst having such an early diagnosis is undoubtedly devastating (and I wish I could have the first 12 months with my DD again) - it does provide the opportunity to access services very early on, apply for DLA (which we use for private therapy for our DD) and start to build your support network (as you are doing here ).

Please keep posting when you feel the need for handholding. x