Saturday, May 1, 2010

Down Syndrome Pregnancy: 54 Things To Do Instead of Worrying

Everday, I talk to a number of mom's who are passing time until the birth of their child with Down syndrome, or they are waiting to find out if their child with have Down syndrome. I remember how long that time can seem. I also remember that at the end of a long day, I'd find myself on the computer looking for information. Sometimes, since I didn't know where to look I ended up at highly medical sites that scared me. I decided to put together a list of 51 things to do instead of worry about having a child with Down syndrome while you are waiting. I hope you enjoy it, and I hope that lots of people will contribute other ideas of what worked for them.

Don't feel like you have to go through the whole list in one sitting, and if something on here doesn't make you happy, move on to something else. These are all the things I wish I had been thinking, doing and looking at instead of worrying about my child when I was waiting out my 1 in 16 odds that she would have Down syndrome.

1. Look for pictures of children with Down syndrome who look like people in your family. When you start looking at a lot of people with Down syndrome and their families they start looking very different from one another - your baby will too!

2. Make a gratitude journal

3. Visit Happy News

4. Watch the Natalie Merchant Wonder Video

5. Read the research behind signing to your child with Down syndrome –

6. Bookmark the Medcalc Growth Chart - you can use it no matter how many chromosomes the baby has

7. Learn a new sign: Milk

8. Learn a new sign: Baby

9. Learn a new sign: Drink

10. Learn a new sign: Eat

11. Learn a new sign: More

12. Learn a new sign: All Done

13. Check out all the baby signs on Signing Savvy -

14. Visit

15. Think of names for the baby

16. Research your local DS group

17. Learn about the Buddy Walk

18. Read my blog post about things adults with Down syndrome can do

19. Read my blog post about business’ run by people with Down syndrome

20. Read Praying for Patience by Rachel Coleman, founder of Signing Time

21. Read Rachel Coleman’s “strong enough to be your mother” blog post and be inspired that you have that kind of strength in you

22. Go shopping and purchase something for the baby that you think Angelina Jolie or the Queen would buy for their children. You child deserves something nice too!

23. Write a list of the things you are most scared about, and post it over on the Baby Center Down syndrome Pregnancy board and let them help you sort out which ones are legitimate and which you don’t need to worry about so much

24. Read about the Pujols Foundation

25. Write down dreams you had for yourself and your family before you found out and picture doing them again.

26. Think of one thing you love to do, and Google that hobby plus the world Down syndrome. I bet you can find someone with DS doing it!

27. Visit The Desk and get a glimpse at the Medicaid services that may be available in your state. If you are worried about finances, this is a good place to start learning.

28. Learn about the Early Intervention Program in your state.

29. Buy a Webkinz pet and play games in Webkinz World. Ok, it is for kids, but sometimes just having something to keep your mind and your hands busy is helpful! You can get one at most Hallmark Stores

30. Visit this Special Needs Dictionary to know the different terms you might hear with a child with Down syndrome

31. Visit Conny Wenk’s blog and check out all of her beautiful photographs of children with Down syndrome.

32. Read some of the Bridget’s Light blog

33. Read Kelle Hampton’s birth story. Poke around other posts on her site to see how Nella is doing.

34. Watch my favorite signing video, Caterpillar Dreams:

35. Think signing isn’t cool? Watch this -

36. Another think signing isn’t cool? Watch this -

37. Learn about the wonderful Karen Gaffney -

38. Learn about current Down syndrome research -

39. Read the book Gifts

40. People may not know what sorts of things would be useful to you and your new baby – check out this list -

41. Are you worried about “doing it all” once the baby comes? Consider a program like E-mealz , dine without whine  or Saving Dinner  – a quick search on menu planning will help you come up with other ideas as well.

42. Watch an episode of The Specials . Try to see past the speech difficulties the individuals have, and watch how they are living their life. Changed my mind about "group homes" forever.

43. Read Jennifer Bekin’s story and bookmark her blog – Jenn is a speech therapist with 3 siblings with Down syndrome.

44. Read my document on Social Media and Down syndrome (I'll link to it soon!)

45. Enjoy this motivation speaker talking about his life

46. Read 10 ways a baby with Down syndrome will improve your life

47. Read about the Traveling Afgan Project, making it’s way around the world!  

48. Check out the inspirational stories, poems and quotes on the CafĂ© Mom message board. You’ll love some and dislike others – try to figure out why you feel how you do – it will help you sort out your feelings about parenting your child

49. Watch some funny clean videos

50. Life with Down Syndrome doesn’t mean you won’t laugh!

51. Visit Down Right Beautiful!  What a beautiful Site!

52. Read about Dr. Brian Skotko - a wonderful person (he was a very complimentary judge after my Karaoke at a DS event), a Harvard educated Doctor, a specialist in Down syndrome and the brother of a woman with Down Syndrome - I'm a BIG fan -

53. Learn about College opportunities for people with Down syndrome and other intellectual disabilities!

54.  Watch this family in action and see if you can picture your life being this normal - including Down syndrome -