HELP!!!

[eidsvold]

I am the new parent contact for my area as part of the Down Syndrome Association of Queensland.

Today I got a call from the DSAQ asking if I could visit a parent.

This lady has just had a baby who has been diagnosed with Down Syndrome. This is her third baby and things are not good. I do not know much more than that.

If you were in that situation - what would you ( as a new mum of child with sn) want me as a parent visitor to do?

Okay this is what I thought of:

1. Listen - goes without saying

2. Have a video called parent to parent to lend them to watch at their convenience and have a book called Down Syndrome the facts -to drop off later.

3. Have a copy of Just kids ( if you know it - good book)

4. Taken some pics of dd1 - baby album ( unfortunately only baby pics are in an album) and some pics of her at kindy and just out and about.

5. Some info of services in our area - again just to leave with her for when she feels ready to make the contact.

Anything - you can think of: ( am trying to organise transport of some kind - she has had a c-section and will be going home tomorrow some time - but babe will stay in for another week - public transport is shite to say the least.)

I am really nervous as this is my first 'official' time.......

help me not be a doofus!!

I bet you will be great

If I was the Mum, I would have been asking you lots of questions about when your DD had reached Milestones. But thats me! She might not want to know that for now!

She may just want to talk

Sorry, no help really! I think you have covered it

Let us know how you get on

I think just meeting someone in the same situation but further along will be helpful. Just removes the isolation. I would have loved someone ike you when I was beginning to have concerns about ds1- you would have been my knight in shining armour

Also you will coo over the baby- bet she's surrounded by people who "don't know what to say".

I've got some baby photos and some photos of her now at kindy etc.

manged to find the just kids book as well as a booklet on breastfeeding children with down syndrome.

I've done this a few times as well. Think you have it covered tbh. Just offer to be there for her for when she needs it. It may be a little too early for her to be clear about her worries. I'd try not to bombard her with stuff. Just take your lead from her. Be as positive as you can at this stage, she can wory about the negative stuff much later, for now she needs reassurance.
Good luck, you'll be fine, your a caring person, and one who knows where she is sitting, that's the most important thing. She doesn't need to know tooo much right now, just that she's not alone and it will all be ok.

i've packed that stuff and some info to leave with her - but like you said will take my cue from her. Am meeting with the hospital social worker first and I think the sw is taking me up to meet her.

WOke up really nervous.

If you haven't had the meeting yet - GOOD LUCK!

If you have had it, I hope it all went well.

just back from visit - went well - parents are upset and angry and in denial and all those things we have all experienced. Baby is gorgeous - ditty but gorgeous!!!

They asked some questions and I left them with my contact details and will be dropping some books nad info in later in the week. Left some books and that for them to read at their leisure. TOld them probably won't want to read anything but it was there for them.

Glad I took the just kids book - has a pic of a child from a similar ethnic background and they remarked on that to each other.

They loved looking at dd1's pics and asked me a lot about what she is doing now.

Feeling quite drained now.

I feel like I blathered on a lot but I just talked about our dd1 and what dh and I felt and had been through.... and that all those things they were feeling were normal and how others had felt the same and how even know for me there were times I was angry and sad and felt it was unjust.

CT what are you doing up so early/late?!?!

Well done! I agree with Jimjams about how great it would've been to have known someone who'd already 'been there' back when my ds1 was dx'ed.

Crossed posts! Dd decided that 2am was a great time for her to wake up and start calling me to get her up. I brought her downstairs before she woke up ds1&2. Of course she's now fast asleep and I'm wide awake. Arrggh!

Congrats Eidsvold I'm sure you will have been a great help. People like you and the others who deal with SN on a daily basis are an inspiration to the rest of us. Hope you don't mind me posting here just wanted to say well done.

oh no - poor thing!!

I think that is something that helped us - dh's old boss ( in the UK) has a teenager with ds and we knew others who had children with down syndrome. Seeing them deal with it and their support and help was sooo valuable and I am sure it helped us deal with it better iyswim.

dd2 did that to dh last week - was able to have a sleep in - off to conference rather than work so did not need to leave so early.... so my late riser wakes at 5am ( not as bad as 3 though) calling for daddy and dd1.