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:
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
• 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.
• 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.