by Missy Skavlem and Stephanie Meredith
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! The Shifting Perspectives exhibit is particularly cool.
2. Make a gratitude journal.
3. Visit Happy News.
4. Find blogs from other parents who resonate with you at the Down Syndrome Blogs website.
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 the signs for: Milk, Baby, Drink, Eat, More, and All Done.
8. Check out DesignMom.com for ways to make life with your baby simply beautiful and fashionable.
9. Make some freezable meals and create a SignUpGenius account to coordinate volunteers for childcare/meals after baby is born.
10. Check out Pinterest for fun ideas on knitting a baby blanket, cooking healthy dinners, educational baby toys, starting a baby book, taking newborn photos, and Down syndrome. And, of course, take a look at the Down Syndrome Pregnancy Pinterest page and make recommendations for us.
11. Take pregnancy photos and prepare for photos of your new baby. Check out The Blessing of Verity: Down syndrome photo tutorial and take a newborn photography tutorial.
12. Watch these videos on the experiences of a couple of dads: Tim Harris’s Dad and Heath White.
13. Check out all the baby signs on Signing Savvy. For our international friends, Australian mums can take a look at Auslan baby signs and British mums can check out British Sign Language baby signs. If you’re really ambitious, take a basic sign language class.
14. Visit bored.com.
15. Think of names for the baby.
16. Research your local Down syndrome group.
17. Read about the national Down syndrome organizations: The National Down Syndrome Society and the National Down Syndrome Congress.
18. Read Missy’s blog post about things adults with Down syndrome can do.
19. Read Missy’s blog post about businesses run by people with Down syndrome.
20. Read “Praying for Patience“ and “Strong Enough to Be Your Mom” by Rachel Coleman, founder of Signing Time, and check out the Signing Time app to learn lots of signs for baby.
21. For a faith-based perspective on Down syndrome, read Amy Julia Becker’s “A Good and Perfect Gift: Faith, Expectations and a Little Girl Named Penny” to read about Amy Julia’s evolution from the sorrow and grief after the initial diagnosis to her appreciation and profound love for her daughter.
22. Go shopping and purchase something for the baby that you think Angelina Jolie or Kate Middleton would buy for their children. Your 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 word “Down syndrome.” I bet you can find someone with Down syndrome doing it! Tae Kwon Do, mountain biking, swimming, art, music, photography, acting … you name 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. Visit this Special Needs Dictionary to know the different terms you might hear with a child with Down syndrome
30. Visit Conny Wenk’s blog and check out all of her beautiful photographs of children with Down syndrome. The Girl with the Freckles is especially cute.
31. Read The Shape of the Eye by George Estreich. It’s good stuff.
32. Read some of the Bridget’s Light blog and Down Syndrome New Mama to get lots of great ideas for new and expectant moms and see a glimpse of life with Down syndrome.
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. Subscribe to Maureen Wallace’s SheKnows Parenting column, and read one of her most popular articles on “Divorce: Does “Down syndrome advantage” exist?”
36. 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 (DSRTF).
39. Read the book Gifts and Gifts 2.
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 who has 3 siblings with Down syndrome.
44. Read Kathryn Soper’s “What Parents Wish They’d Known: Reflections on Parenting a Child with Down Syndrome” to read quotes from other parents.
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 Dr. Brian Skotko - a wonderful person, a Harvard educated doctor, a specialist in Down syndrome and the brother of a woman with Down syndrome – We’re BIG fans!
48. Learn about college opportunities for people with Down syndrome and other intellectual disabilities!
49. Go to Down Syndrome Education International for lots of great information about how to teach your baby. There are also links to really helpful apps to start reading recognition at a very young age.
50. Start checking out different apps at the blog “With a Little Moxie: Educational Apps for Kids with Special Needs” to see which ones you think are fun.