(The Q&A will continue soon...the last two remaining questions were doozies, and I'll need to give them a bit more time and thought to write!)
When Samantha was born, we were fortunate to have received support and information right off the bat from the hospital. A social worker came to visit us and brought a folder of leaflets, and while my memory of that visit is pretty much nonexistent (I'm sure none of you are surprised!), I was very relieved to have what was brought. One of those leaflets was from DSANV, and my eyes zeroed in immediately on the name and phone number of the Parent-to-Parent contact there. I think it was only within a matter of days after Sammi's birth that I called and spoke to H., who is now a great friend, and H., in turn, put me in touch with another parent volunteer in my town whose daughter with Ds also had a heart condition. I had so many questions and remember how helpful it was to actually get to speak to people who'd been there and knew what I was going through, people who just listened to me as I unloaded what I needed to unload, asked what I needed to ask.
I became passionate about new parent outreach, and was thrilled to join the Parent-to-Parent team, going through several training programs, when Samantha was only a year or so old. Paying it forward, in a way, but more importantly, providing a much-needed service that I wish was available everywhere.
Sadly, it's not.
Time and time again, I hear tales of new parents of babies with Ds who get no information from the hospital, who have no idea what their resources and supports are. They're left dangling in a sea of negativity on all sides, not sure how to love and care for their children, not sure what to think about their chances of any kind of future. It's such a shame, makes me really sad.
How many of you have Parent-to-Parent programs within your Down syndrome associations? How many of you actually reached out to or were contacted by them? How many of you would like to see these kinds of programs brought into your area? I'll tell ya, ours is a GREAT one, and I'm proud to be a volunteer. I have made some amazing friendships through my contacts as well.
I'm not sure where I'm going with this post, other than to bring attention to the Parent to Parent concept, and to share my experience. I'd love to hear yours, too.
Don't forget tomorrow's Blog Hop! Please join the linky below!
12 comments:
I really, really, really want to do the Parent-to-Parent program... I didn't have one and I would have LOVED one. The problem in my case was more that everyone kept saying "call so and so; she's just GREAT!" or something like that and um... we are talking about ME here; I DON"T CALL PEOPLE. I'll say, yeah, sure and NEVER DO IT.
There is a new deaf mama in the area with a surprise dx and I can't stop thinking about her. I feel a little obsessed - and didn't know what else to do but give my number out and say TEXT ME! PLEASE TEXT ME!
I really want to do the training program and I'm scared of the time it takes. I think it's worth it though. Thanks for writing this post, Becca - totally inspires me to get on with it and train myself.
sadly the things we had locally have fallen apart during our adoption process. I have heard of a few babies being born recently with a DS diag. It makes me so sad that they dont have a group to rally around them. Thank you for this post. I may contact our Dir and ask her if we can publish a meeting time/ place of some sort and just start again to see if it takes off. Even if only two families are regular I think that maybe during different seasons we might see more interest.
After Kamdyn was born, we were told about our local group, and we went online and signed up, and then were contacted. Now, I'm the new parent contact for our group's website and our local hospital. I would like to expand and do something similar where Kamdyn was born also. From my understanding, I cannot be given someone's information, however, for privacy reasons. So I don't know that I could ever be the one to contact them first. They have to reach out. But I'd like to make some kind of flyer or card that can be given along with a small packet of information that the hospital could give them. I just need to get on the ball and get in touch with people who can see to it that it happens.
Well, I have been MIA, these past few weeks. Peeking in every non and again to catch glimpses of our very favoritist buddies, Sammi being right on up there. Have enjoyed all the beautiful words and pictures and tools you have shared with the masses.You are a true advocate and an amazing, amazing mommy. Oh and wife and photographer and on and on and on ...
Getting back in the swing of things and hoping to be around more.
And, watch for an email coming shortly.
Oh, I want to get involved in parent to parent! Let me know how I can!
I can't remember if they gave me anything to call anyone. I was so numb at the appointment, it as like I was trying to listen underwater. But I live by Kelle Hampton and got in contact with her on my own. I have been meaning to go to Maternal Fetal Medicine and offer my email and number to give to any parent who gets the diagnosis. I know my conversations with Kelle were what gave me hope and comfort.
Hi Becca, I'm really enjoying your blog, it's so informative and the Q & A at the moment are great for me as a new mom with a ds baby girl. We live in South Africa and have a Down Syndrome Association to put us in touch with other parents but I like the sound of the parent-to-parent system. How can I find out more to see if we can set that up here?
Mr B and I are both contact people here in our part of Austria. It is an amazing feeling to be able to crash the negatives and exchanges them for posetives when meating new families.
Love the pics!
Bloghopped over here today, need to add you to my links :)
Hopefully Katey will see this response... Katey - congratulations on your new baby!!! E-mail me at bateminx@yahoo.com, and I'll send you the contact information for our P2P contact person, and she may be able to give you more information about how your local DSA can develop a better program. :-)
"Hoppin'" by today. :o) Thought I would just add that we have a good program of New Parent Support here in St. Louis. I'm a volunteer and have enjoyed it greatly getting to know the new families. I lived in IL when Braska was born, and I didn't have a parent contact then, though I think that was probably by own choice back then. I can't remember! But I was not at all quick to get involved in the local group... seems so funny now. :o)
Gettin' a late start. Better late than never, right? Thanks for hosting!
I'm still trying to get caught up on a few old posts and keep up with new ones...
We didn't get ANY info from our hospital beyond them mentioning SSI. We didn't have a surprise diagnosis, but it wasn't confirmed ahead of time either. Somehow I think that threw the hospital and the doctors off. They only time I can remember anyone mentioning Ds was one of the nurses in the NICU as we talked about feeding. Something of the lines of babies with Down syndrome may need some jaw support.
Our Ds association does have a parent network. I'm not terribly involved with the group as a whole as we are so far away, but I am signed up to talk to any parents in our area who want to.
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