Miriam Kauk from the Einstein Syndrome website wrote a series of blog posts a few months back on the "Top 15 Things a New Parent Should Know." Miriam's daughter with DS is 16 years old now, so through the years Miriam has learned a lot. The ES website was one of the best websites we ran into when Osiyyah was a few months old. It was a huge help to us.
There is also an ES listserv, which I will share tomorrow. But, for today, I'll share the Top 15 Things by Miriam.
I'll start by quoting her:
For the past several months I’ve had an article, and/or a series of blog posts stewing around in my mind. “The top 10 things new parents of a child with Down syndrome should know.” In our 16 years with Mary, I have learned a tremendous amount, most of it the hard way. And I realize that this website does not have this information in any way that is easily accessible. It is all there in the archives of the email list, but the hunting and distilling would be a daunting task for any new parent.Her list:
So today I’m writing. I have clarity on what I need to do, and the time is now. I have a deadline of early next week when this article must be finished. After that I’ll refine it into a series of blog posts.
Yesterday I took several pads of neon colored post-it notes and wrote my topics on them. I laid them out, sorted, moved and prioritized. I ended with 15 piles of topics, not ten, and I can’t cut it down.
15. Treat the Thyroid
14. Start Ginkgo Biloba Now
13. Aggressively Treat Ear Fluid and Upper Respiratory Infections
12. Begin Now with a Kitchen Makeover
11. Become Professor Parent, PhD
10. Focus on Gut Health
9. Learn to Build and Support the Immune System
8. Don’t Wait for “Their Own Time.”
7. Pursue Speech, not Sign
6. Prioritize Behavior
5. Get a Neurodevelopmental Evaluation and Do the Program
4. Research the Vaccine Controversy for Yourself
3. Acknowledge and Treat Gene Over-expression
2. Beware of Creeping Low Expectations
1. Embrace Your Calling
You can view it all at this link.