53 things to do instead of worry
by Missy Skavlem
Everyday, I talk to a number of moms who are passing time until the births of their children with Down syndrome, or 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 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 bored.com
15. Think of names for the baby
16. Research your local Down syndrome 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 businesses 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 Down syndrome 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 blog, Nella’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 on cognition from the Down Syndrome Research and Treatment Foundation (the DSRTF)
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 motivational 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 its way around the world!
48. Check out the inspirational stories, poems and quotes on the Café 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!
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