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 http://www.iamthankful.com/gratitude-journal/

3. Visit Happy News http://www.happynews.com/

4. Watch the Natalie Merchant Wonder Video http://music.aol.com/video/wonder/natalie-merchant/1102808

5. Read the research behind signing to your child with Down syndrome – http://www.riverbendds.org/useofsigns.html

6. Bookmark the Medcalc Growth Chart - you can use it no matter how many chromosomes the baby has http://www.medcalc.com/growth/

7. Learn a new sign: Milk http://www.signingtime.com/blog/2010/02/sign-of-the-week-milk/

8. Learn a new sign: Baby http://www.signingsavvy.com/wordlist/13/BABY/230

9. Learn a new sign: Drink http://www.signingtime.com/blog/2010/04/sign-of-the-week-drink/

10. Learn a new sign: Eat http://www.signingsavvy.com/wordlist/13/EAT/252

11. Learn a new sign: More http://www.signingsavvy.com/sign/MORE/272/1

12. Learn a new sign: All Done http://www.signingsavvy.com/search.php?search=all+done&find=1

13. Check out all the baby signs on Signing Savvy - http://www.signingsavvy.com/wordlist/babysigns

14. Visit http://www.bored.com/

15. Think of names for the baby

16. Research your local DS group http://www.dsaia.org/joomla/index.php/affiliate-directory.html

17. Learn about the Buddy Walk http://www.buddywalk.org/

18. Read my blog post about things adults with Down syndrome can do http://yomammamamma.blogspot.com/2009/10/31-for-21-what-can-person-with-down.html

19. Read my blog post about business’ run by people with Down syndrome http://yomammamamma.blogspot.com/2009/12/businesses-owned-by-people-with-down.html

20. Read Praying for Patience by Rachel Coleman, founder of Signing Time http://www.rachelcoleman.com/2007/05/09/mothers-day-essay-i-won/

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 http://www.rachelcoleman.com/2008/07/15/strong-enough-to-be-your-mom/

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 http://community.babycenter.com/groups/a14515/down_syndrome_pregnancy

24. Read about the Pujols Foundation http://www.pujolsfamilyfoundation.org/about/

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. http://www.thedesk.info/

28. Learn about the Early Intervention Program in your state. http://www.nectac.org/contact/ptccoord.asp#OH

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 http://earlychildhoodmichigan.org/Dictionary.htm

31. Visit Conny Wenk’s blog and check out all of her beautiful photographs of children with Down syndrome. http://connywenk.blogspot.com/

32. Read some of the Bridget’s Light blog http://bridgets-light.blogspot.com/

33. Read Kelle Hampton’s birth story. Poke around other posts on her site to see how Nella is doing. http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

34. Watch my favorite signing video, Caterpillar Dreams: www.youtube.com/watch?v=gGF3iC0o_1s

35. Think signing isn’t cool? Watch this - http://www.youtube.com/watch?v=QmKnQjBf8wM

36. Another think signing isn’t cool? Watch this - http://www.youtube.com/watch?v=CCZkQ_s-Bdk&feature=related

37. Learn about the wonderful Karen Gaffney - www.karengaffneyfoundation.com/

38. Learn about current Down syndrome research - www.dsrtf.org/

39. Read the book Gifts http://www.amazon.com/Gifts-Mothers-Reflect-Children-Syndrome/dp/1890627852

40. People may not know what sorts of things would be useful to you and your new baby – check out this list - http://yomammamamma.blogspot.com/2009/05/things-you-might-want-if-your-baby-has.html

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

42. Watch an episode of The Specials http://www.the-specials.com/ . 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. http://communicationskillsforlife.wordpress.com/about/

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 http://www.youtube.com/watch?v=ROWbyKVLYr8&feature=player_embedded

46. Read 10 ways a baby with Down syndrome will improve your life http://hubpages.com/hub/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! http://www.thet21travelingafghanproject.com/2009/02/t21-travelling-afghan.html  

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 www.cafemom.com/group/1152/forums/read/1062122/Inspirational_Stories_Poems_and_Quotes

49. Watch some funny clean videos http://funnycleanvideoclips.com/

50. Life with Down Syndrome doesn’t mean you won’t laugh! http://www.unomas21.com/amusing.htm

51. Visit Down Right Beautiful!  What a beautiful Site! http://www.downrightbeautiful.org/

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 - http://www.brianskotko.com/

53. Learn about College opportunities for people with Down syndrome and other intellectual disabilities! http://www.thinkcollege.net/

54.  Watch this family in action and see if you can picture your life being this normal - including Down syndrome - http://vimeo.com/45152895

8 comments:

PrincessKCRoo said...

LOVE LOVE LOVE this!! :)

Susanna said...

I am bookmarking this to go through with a fine-tooth comb over the next, uh, 9 weeks! :-) Thank you, Missy, this is a great idea!

Siti said...

Thank you! I wish I had this list when I first gave birth to Sophie 6 years ago.

Anonymous said...

LOVE IT MISSY!!!!!!!!

Nancy I

Melissa M said...

Great list! Even though Claire is already here, I'm still going to check out your links.

Runningmama said...

Just found your blog...what a wonderful list I wish I would have found a year ago when my daughter was born and we also found out she had DS. I am your newest follower!

Kelli @ http://livinglifewithes.blogspot.com

Cole said...

I've got a lot of work to still do Missy! I just saw this- awesome list!

Yo Mamma Mamma! said...

LOL Cole, don't think of it as work! This stuff is fun!