Believing in Achieving Conference

My weekend involved, in no particular order: 4 plane flights, a blizzard, an unexpected 2 hour detour on a Glacier Charters bus, a wonky computer, a plastic baby doll in my suitcase as it went through the airport security X-ray, a few tears, some excellent questions, and laughter–lots and lots of laughter.

This is the beautiful, powerful keynote address from Patricia Bauer.

This is an amazing organization in Orange County, CA that has an extensive list of free downloads for parents interested in research-backed methods for teaching reading and math to kids with Down syndrome. Go here for the learning materials. You need to register to receive the downloads.

This is the DVD I brought with me to share:

View this montage created at One True Media
Our Family

And here’s the outline of my presentation, which is all the practical points of Road Map to Holland, distilled into a 1 1/2 hour talk (I used the baby doll to help me discuss newborn care):

New Parent’s Survival Guide

Your Baby

• A description of your baby and what you might expect, with an emphasis on how our babies are more like other babies than they are different. Also, daily care: including feeding, diapering and skin protection.

• Medical Care: quick outline of tests that are routine for babies with Down syndrome, and where to get information on such procedures. Also, vaccines and well-checks and a break-down of care providers and how to choose the right one for your baby.

• Early Intervention: speech therapy, physical therapy, occupational therapy—what to expect, when to begin, whom to contact.

• Parent’s Bill of Rights: including how to build successful relationships with your baby’s team.

Your Family

• Mom: a discussion of the post-partum experience, including bonding, feelings, expectations, hopes and fears and how to manage them.

• Mom and Dad: differences in ways we handle our feelings, action v. inaction, ways to promote communication and acceptance.

• Siblings: assessing what our children know about Down syndrome; finding appropriate ways to speak about it with them.

• Extended Family & Friendships: possible reactions and their reasons; the importance of building community; learning about ways to educate and teach others in order to gain support and encouragement for all our families.

And finally, a word about the Down Syndrome Guild of Kansas City, which celebrates its 25th Anniversary this year. It was formed by a group of parents who envisioned an organized network of resources, and has grown from a grass roots parent movement to a premier nonprofit organization focused on advancements in education, inclusion and acceptance of people with Down syndrome. In addition to their network of amazing parents, the DSGKC has an excellent list of downloads, here.

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About jennifergg

I am a daughter, sister, wife, and mother to three sons. I am a cookie-baker, storyteller, kisser-of-boo-boos, and an advocate for children with disabilities. Pinwheels is my blog about life as the mother of a boy with Down syndrome. I also have a website at www.jennifergrafgroneberg.com
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10 Responses to Believing in Achieving Conference

  1. Jill Boster says:

    After a year or more of reading every single post, I finally am “brave” enough to submit a comment! hehe! Thanks for hanging out with all of us…Iit is not every night I get to eat dinner with a “celeb”! What a memorable day/night! Great DVD/pictures of your family.

  2. Jennifer says:

    Jennifer…You Rock!!! {{{HUGS}}}}

  3. Kleidy says:

    What a BEAUTIFUL family!!! :D. LOVE your DVD!!! :D. Thank you so much for all you do ~. Jennifer you are AMAZING!!! :D

  4. Rebecca P says:

    Amy mentioned that winter weather. What an amazing montage, and I finally got to see Tom. :)

  5. Chrystal says:

    I love your video. What a beautiful family! And how great is it that you get to use your experiences to help other families the way you do?

  6. Dana Halle says:

    Hi Jennifer, It was great talking to you on Saturday. Thank you for the kind post about the DSF learning materials – your comments were actually forwarded to me by a colleague who saw them. Just wanted you to know for future reference that DSAOC – whose website is listed under “This” is not the same organization as DSF – listed under “here.” The association does good work as well, but I didn’t want people to go to that website expecting to find our materials. I think they do have a link to our website, but there is no connection between organizations.

    If you ever have follow up comments or requests, please let us know! It was a terrific conference – I agree!

    Dana Halle

  7. jennifergg says:

    Thank you, Dana! The links are now correct.

    xo

  8. Sandy says:

    hey Jennifer, I just wanted to let you know I LOVED the video…thank you for sharing your family…the boys are so cute and growing up so fast, too fast for you, I’m sure.

    Sandy

  9. Debbie Yost says:

    Jennifer,
    It was great meeting you and having dinner with you. Next time you are in town we’ll have to try for no snow storm! It was melted by the next day. Crazy weather.

    Debbie

  10. Nice mark out of things – Interesting – one could think this way also . Thanks for the post

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