Almost two years ago, Matthew was born. After he was diagnosed with Down syndrome in the week following his birth, we received a New Parent packet from the Down Syndrome Association of Greater St. Louis (DSAGSL) while we were still in the hospital. I skimmed through a few pages in the packet. Nothing made sense to me. The only sentences that I understood were, "If you feel overwhelmed and don't want to read about Down syndrome today, don't. You can educate yourself when you're ready. There's time." Great advice! I put the packet away. It wasn't re-opened until after we received a similar packet from a new parent volunteer in my area a few weeks after we were home.
This coming Tuesday, I'm participating in a focus group at the DSAGSL to review the New Parent packet. What needs to be changed? Is there new and helpful information we should add?
What's in the New Parent Information Packet?
- A Baby First... Information about Down Syndrome published by the National Association for Down Syndrome (NADS).
- Nursing Your Baby with Down Syndrome - a 15-page booklet
- Healthcare Guidelines for Individuals with Down Syndrome - for pediatrician
- The Oral-Motor Myths of Down Syndrome by Sara Rosenfeld-Johnson, M.S., CCC/SLP
- Growth Charts for Girls and Boys with Down Syndrome (0-3 years and 2-18 years)
- Early Intervention - 1 page answering What is it? Why do we need it? How do we get it?
- A Promising Future Together: A guide for new and expectant parents. A booklet provided by the National Down Syndrome Society (NDSS). The Promising Future Together video is also available on the NDSS website.
- Telling Friends and Family Your Child Has Down Syndrome - 1 page of guidelines on writing the birth announcement.
- How Do I Talk About Down Syndrome? A Language Guide for Family, Friends, and Others.
- Parent Resource Guide. Compiled by the DSAGSL containing Missouri First Steps (Early Intervention) Office Listings, St. Louis Area Outreach/ Preschool Centers, Missouri Department of Mental Health Regional Centers, Internet Resource Guide.
Brochures:
- about the Down Syndrome Center at Children's Hospital, St. Louis.
- for new parents about the DSAGSL.
- about Down Syndrome published by the National Down Syndrome Congress.
Got any suggestions?
Off the top of my head, a few things I've thought to add are:
- a small grandparent's packet
- ideas of how to explain Down syndrome to siblings, particularly older ones.
- a list of inspirational books like Gifts or Roadmap to Holland.
What did you find helpful in the new parent packet that you received? What did you wish it had? If anyone has more ideas or suggestions they would like to share, please feel free to leave a comment. Thanks!
Sunday, September 6, 2009
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9 comments:
Great post!
We are reviewing our new parent packet also. The growth chart is currently in our package too, and I found that so helpful. Also a calendar from Band of Angels that had stickers to place on the dates that your baby met milestones. Which was such a gentle way to track development without stressing over it.
One thing that we have in our new paren packet is a consent that the new parents can sign (not immediately, but after a month or so) to have a 'Helping Parent' with our Parent to Parent program 'matched' to them for questions and on going support if they want. The matched part would be another parent with a child who has Ds and other appropriate needs such as our son had intense medical issues along with the Ds and the program matched us with a similar parent who was a bleesing (she had twins also, one with Ds and one typical). The nice part of this program is that new parents don't have to contact anyone, they sign the release form and the match is made and the supportive parent then makes contact with the new parent. Take care
I'm glad they're reviewing it. It's not bad as it is when I saw it last, but improvement is always good.
Sandi had a great idea about the matching parent thing...that would be really helpful, and if it's voluntary, then it would be intrusive on those who don't like it.
The other thing I've thought would be helpful is a list of links to online resources. Forums, health sites, and specifically blogs, maybe of local families, maybe just well done blogs in general. SO many people can attest, as can I, to what a massive help being able to look at pictures and stories of the "normalcy" of life with DS was to them at the beginning. It's a non-threatening way to adjust and read about other families. And there are just so many out there, it makes sense they'd have some listed. They could do a disclaimer (since the DSAGSL seems to be all about disclaimers) that said they weren't able to endorse all info on all the sites, but that it might be helpful to have the links available.
I'll be interested to see how it goes!
Hi Ria! I think it's great that you guys are reviewing it! Unfortunately, I did not receive a packet at all so I think all of this information is great for new parents. Fortunately, while I was still in the hospital, a good friend of mine found a lot of information for me and made me my own packet that got me started. Then, I found a lot of other things on my own. Here are a couple of my suggestions:
- I DEFINITELY like the Grandparent's packet although in my situation, it would have been for MY grandparents. Their information and perceptions were COMPLETELY outdated and despite that, they have been great (They actually don't believe he has DS, but I think that's because he is doing so well compared to their perceptions).
- 'Gifts' was my 1st inspirational piece I read and was a big help. I think inspirational readings are an essential component. What really helped me in the beginning was finding things to read where people were in similar situations. I was desperately seeking someone else who understood.
- Maybe a list of blogs the way your have yours listed on your site, grouped by ages? I found all of your blogs after I had started mine and that has been my BIGGEST and STRONGEST help. As I have mentioned before, I am super lucky to have an incredible support system, but having people who completely understand has been a totally different feeling for me.
- Another essential component I think is something specific for Daddys. My husband and I handle things completely differently and for me, submerging myself in research was how I got through the 1st few weeks. He has ALWAYS been great with Colin, completely loving and caring and has done everything he possibly can for him, but I think if he had resources (at least ones we were aware of him) specific for his Daddy role it would be a big help. I'm not even sure I know exactly what that would be right now, but I think it would be a big help.
Kelli
How awesome that you get to have input!!! We have NOTHING for Down syndrome families in our SW GA town, well at least in the birth to 18 category. They have an excellent program for young adults and have several group homes here in Albany, but no support group or anything for new parents.
I've often thought about seeing what it would take to start one up, but I am NOT a great organizer of those things. I would love to help others get it going, just not the one to start it myself.
Hey Ria,
DSAGC recently created a "new parent magazine."
Here is a link to it (and you can read about Violette!):
http://www.dsagc.com/documents/DSAGC-ParentsGuide-refinedv3a.pdf
And here are all the "packets" that DSAGC offers. We like sending the family and friends one out, as well as the grandparents one. That one was created by a grandmother that works at DSAGC...
http://www.dsagc.com/resources_info_packets.asp
I'm a new reader of this blog and this is a great idea. Two quick thoughts:
1) Not everyone is a reader and we've found the video from the National Down Syndrome Congress to be indispensable-- can't remember the exact title but I think it is something like "Down Syndrome: the first 18 mos."
2) I'm sure this has been covered by others but a huge CONGRATULATIONS! needs to be included. So many folks worry about "helping" parents of DS when the same concern isn't there for parents of new children while they are celebrating. DS shouldn't stop the celebrating... I know, preaching to the choir.
There is a brochure, Kathyrn Soper (of Gifts) has put together: I Wish I Would Have Known (with quotes from parents). It gives a peek into the future for new parents and it's awesome!
what a great thing to be a part of! Something that I got, not from the hospital, but from our local NDSA her in Ca. was a dvd called Down syndome~the first 18 months. It's chalk full of wonderful information and was a wealth of help. Check it out! :)
I want to 2nd, or 3rd the opinion about the Grandparents information. They have been the hardest in our circle. I know its because we have come so far in treatments and prognosis. But having a MIL as a retired Rn I was Shocked at her reaction and she has been the slowest to get on board. We are adopting a child with Down Syndrome so that adds another level to our needs and concerns.
Thank you for the wealth of information on your blog. Esp the toy suggestions. Bringing home a toddler almost 4 but at a developmental age of 18 mos. (Congenital cataracts as well) made it difficult to go right out and purchase what other 4 yo girls are playing with.
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