50 things to do instead of worry

March 10, 2014 in Emotions

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. Watch this video featuring people with Down syndrome and their message to future moms by CoorDown in Italy.

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, BabyDrinkEatMore, 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-mealzdine 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.

Who was I then? Who am I now?

February 24, 2014 in Emotions, Future

After giving birth to a child with Down syndrome following a prenatal diagnosis, parents often reflect about how their children with Down syndrome have influenced their lives, their perspectives, and their appreciation for what life has to offer. Expectant moms are often worried about the impact on their lives and families. When baby’s smile and coos are not here yet, often the predictions about impact tend to be negative. While some of moms do have confirmed and possible medical issues on the horizon, worries about such things as these can sometimes take over perceptions of the future.

The moms below share how their child with Down syndrome has changed them …  where they started, where they are now, and how their child has changed the way in which they view themselves, their family, life, and disability.

You can also read a diverse range of stories from sixty-three mothers of children with Down syndrome in GIFTS: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives.

Reclaiming Joy

January 21, 2014 in Emotions

Our book has a chapter addressing the emotional impact of diagnosis, and for most expectant parents this is an emotionally volatile time.  However, many expectant parents progress forward to the extent that they are excitedly anticipating the birth of their baby.  Sometimes there are parents whose difficult days were few or barely there, and others who have left those days behind.

Have you or did you reclaim the joy of pregnancy?  Are your loved ones or acquaintances puzzled by your enthusiasm?  If you were a parent whose tough days were very few, share with those of our parents who are feeling happier than they expected.  Even if your feelings are (or were) happy one day and sad the next, tell us what makes you happy, hopeful, and excited.

The first year: reflections and advice

January 15, 2014 in Future

Many of our expectant moms are ready to deliver, and they could use some “been there done that” advice on the first year of a child’s life.  Were there things you did worth sharing with expectant parents?  Did you have missteps or regrets?  Have you learned of things since that time that you wish you had known then?

Missy has a great blog post on what she did with her daughter Violette in the first year, a great read for expectant moms to tuck away for later.  She talks about attitude, developmental charts, signing, tummy time, and much more.   Let’s hear from other experienced parents about the lessons they have learned.

A letter to your doctor

January 1, 2014 in Birth Plans, Comments, Medical Provider

As you prepare for the birth of your baby, you may have heard some personal stories of moms who experienced some awkwardness in the delivery room or later in the hospital. It may be helpful to tell your doctor what kinds of statements make you comfortable or uncomfortable, with suggestions as to how to talk to you after your baby is born. Ask your doctor to share it in advance with the L & D staff, and bring a few copies with you just in case. Experienced moms, did you write letters to your doctors? Expectant moms, would you like to share a draft of your letter and receive some advice?

DownSyndromePregnancy.org has a sample letter from one expectant parent who combined her concerns for the pregnancy, her questions about care and delivery, and her requests for appropriate language into one letter to her doctor.  You may chose to address questions or concerns orally, or write down your thoughts.  Your desires and concerns may differ drastically from our sample.

Siblings Speak Out: Jennifer Meyers Bekins, MS, CCC-SLP

December 3, 2013 in Siblings

SIBLINGS SPEAK OUT
Dreams realized: the gift of Down syndrome
Jennifer Meyers Bekins, MS, CCC-SLP

As a nine-year-old little girl with two younger brothers all I wanted was to have a sister. I wished on stars, birthday candles, and dandelions for one. Then one day my mom came in my bedroom and wrote this in my diary:

August 24, 1987

“Mom told me she was pregnant.”

Yes! Pregnant! And I knew it was a girl. Not because we found out at the 20-week ultrasound. I knew all those wishes and prayers had finally paid off. And when she was born and I saw her fluffy blonde hair and big blue eyes. My parents even used the name I had chosen, April Joy, which like my new little sister, was perfect.

I found out soon after she was born that April had Down syndrome. I can’t remember if I knew anyone with Down syndrome. When April was nine months old I wrote that same diary:

January 18, 1989 1:45 pm

“Dear Diary, I’m sick with a stomac flue. I don’t have very much homework. My   sister April Joy has Down syndrome! It’s not bad. You want her ex-tra chromozone?”

I remember asking my father and aunt if having Down syndrome meant April was “R-E-T-A-R-D-E-D?” My father was very gentle in his answer telling me he didn’t know. That she would probably learn things slowly. That he and my mother would love her just like us. She was one of us – family.

Even though I knew April had Down syndrome she was still perfect in my mind. She just had this one little thing we needed to “fix.” At least that’s what I thought therapy was. The therapists were going to make Down syndrome go away. As an adult I realize that Down syndrome is part of who April is – and it’s not going away. And neither are her blue eyes or blonde hair. It’s one of the many things that make her who she is as a whole person.

“Will my children have a true sibling relationship with my child with Down syndrome?”

April is my sister. We’ve had our share of laughs and fights. But we enjoy just being sisters. She can talk to me about her love life and I can vent about our mother. Sisters.

My relationships with my youngest brothers Jacob and Sam are very different, not because they are adopted and have Down syndrome, but because of the large age difference. I moved away when they were only two and six years old, so I’m more like a close aunt. I’ve been happy to get to know them in their “teens” since they moved to Cincinnati with my parents and sister.

It is said that the sibling relationship is the longest relationship we experience. Parents of children with Down syndrome can nurture this relationship in the following three ways:

First, expect your children to be children together. Encourage game play, dress-up, dancing, sleeping bag camp-outs in the living room. Depending on age and birth order some children will are more likely to be little-mothers – they want to do everything for their sibling with Down syndrome. I was this way given a 10 year age difference between April and me, being the oldest, and being a girl. Make sure the sibling does not have too many responsibilities changing the role from sibling to helper or additional parent.

Second, create an atmosphere of consistency. Tell all the children in the household about your behavioral expectations. Some make a list of family rules that no one is allowed to break, including your child with Down syndrome. Statements such as, “Your sister doesn’t understand. She has Down syndrome,” will only foster frustration and resentment. Children with Down syndrome learn these exceptions early on much to the annoyance of their siblings.

Finally, understand that your child with Down syndrome is one member of the family. Make decisions that are for the best interest of the family and everyone will benefit. You will need to examine your financial decisions and preparations for the future. Decide with your spouse or partner how you are going to delegate time.

“Will a child with Down syndrome will take up a large amount of parental time, depriving the other children of attention?”

Doctor appointments, therapy visits, and school involvement may involve time away from other children. Talk with your children about how this makes them feel. Listen to them, give them support, and understand it is okay if you don’t have all the answers. Balance time spent on one child with a family movie, game night, or a “date” alone with each of your children.

I’ll be honest. We went to a lot of therapy visits, but my mother and siblings’ therapists did an amazing job including me the process. Conversely, April was included in our lives too. She came to swim team, basketball games, and soccer tournaments. We were a family. We enjoyed life together.

“Will my other children be prevented from achieving their dreams and having a normal life?”

I never thought, “Now that my sister is born I’ll never enjoy the life I was meant to live!” No, my life has not been normal. It’s been atypical – and richer, and fuller than I ever thought imaginable. My brothers Derek and Dan are in very different fields of study from my own, living full lives. Living with April, Jacob, and Sam did not prevent us from achieving our own, very different, dreams.

Now that I’m married and have two sons I appreciate my siblings with Down syndrome even more. The relationship my sons have with my siblings with Down syndrome is different than with my brothers without Down syndrome, but that doesn’t mean it’s any less important. In fact, being involved as an adult with my siblings with Down syndrome has provided my children life-lessons on topics like acceptance, disability awareness, fairness, and civil rights.

“I’m afraid there will be only negatives, no positives, of having a sibling with Down syndrome.”

It is my hope that my perspective has alleviated this concern. It’s been nearly 23 years since April was born so I have the benefit of looking back on our childhood together. There were and continue to be laughs and tears, fights and late night chats. I did not choose to have a sister with Down syndrome and neither did my parents, but my wish did come true. She just came with something more than I’d expected.

Jennifer Meyers Bekins, MS, CCC-SLP,  is a Speech Language Pathologist at The Jane and Richard Thomas Center for Down Syndrome, part of Cincinnati Children’s Hospital Medical Center.  She has five siblings: Derek (30), Dan (27), April (22 with Down syndrome), Jacob (18 with Down syndrome), and Sam (13 with Down syndrome).

Jennifer maintains Communication Skills for Life, a speech-language resource blog for parents, professionals, and friends of children with Down syndrome.

CLICK HERE to make comments on this essay.

Expectant parents have many concerns, including their other children.  Parents ask themselves hard questions such as, Will my other children be prevented from achieving their dreams and having a normal life?” Our pregnancy book references the research on positive impact on siblings, but today we start a new series, “Siblings Speak Out” to hear first hand sibling perspectives.  Our first guest is Jennifer Meyers Bekins, MS, CCC-SLP.  Jennifer is a Speech Language Pathologist at The Jane and Richard Thomas Center for Down Syndrome, part of Cincinnati Children’s Hospital Medical Center.  She has five siblings: Derek (30), Dan (27), April (22 with Down syndrome), Jacob (18 with Down syndrome), and Sam (13 with Down syndrome).

CLICK HERE to read Jennifer’s advice to you.

New Research Shows Potential Benefits When Pregnant Moms Increase Choline Intake

October 25, 2013 in Research

New research from Cornell University published in the journal Neurobiology of Disease in July shows that the cognition of mice with Down syndrome improves dramatically with maternal choline intake. What this means is that women who increase their choline intake while pregnant and expecting a child with Down syndrome might improve the brain function of their child, reduce the risk of Alzheimer’s disease, and improve spatial cognition.

Barbara Strupp, Cornell professor of nutritional sciences and of psychology and the study’s senior author, says, “Mounting evidence suggests that many women may not be consuming enough choline during pregnancy to promote optimal brain development and cognitive functioning of their babies … Increasing choline intake during pregnancy is sound nutritional advice for all women and may offer an even more pronounced benefit for Down syndrome offspring.”

While the study is promising, Dr. Brian Skotko tells us that it is important to consider that “All of the ‘mother’ mice had Down syndrome, just like their offspring. So, it is always difficult to separate the effects of a pregnant mouse having Down syndrome versus some therapeutic intervention.” In addition, he adds, “The studies are very preliminary. In short, some mice showed improvement on one task related to memory. As the authors point out, ‘future studies are needed to ascertain whether the beneficial effects of [choline] are seen in humans.’ So, there is quite some distance between these mice and humans.”

So, ultimately, the research could lead to some very helpful benefits for those who receive a prenatal diagnosis of Down syndrome, but more research is needed to discover the effectiveness of the treatment in humans. That being said, increasing choline intake through regular dietary intake poses almost no risk for most pregnant women and could be beneficial to their baby. Strupp says, “Choline is an essential nutrient for all individuals, but pregnant women have an even greater need due to the demands of the developing fetus.” So, pregnant moms who want to increase their choline intake can do so by eating more of foods such as eggs and meat, which have the most concentrated sources of choline, as well as broccoli and cauliflower. It’s also possible to take choline supplements, but be sure to consult with your obstetrician before adding any additional vitamins as a pregnant mom and to figure out the safest dosage.

Let us know pregnant moms, what do you think?

Positive support from friends, family, and health care professionals

August 26, 2013 in Comments, Friends and Family, Medical Provider, Support

Katie Ryder with her grandmother Lona Kewley

We would like to hear from both experienced and expecting parents about the wonderful support they have received from friends, family, and health care professionals. We spend a great deal of time helping parents cope with negative or stinging comments, mainly because we do not have built-in coping mechanisms for those unexpected events. Sometimes when in the stress of pregnancy post-diagnosis, a negative comment can send us reeling, and may actually drown out the many positive comments we hear.

However, there are extraordinary people out there. People who rise to the occasion and give a piece of themselves to give genuine, loving support. Focusing on their words and their actions, their support can help build our confidence and reinforce the knowledge that the world is a welcoming place for our children.

Sometimes that support comes from friends and loved ones who dive in to learn more about Down syndrome and the available resources so that they understand our children a little better and how to help them achieve their potential. Other times that support comes in the form of friends visiting the hospital and bringing blankets, stuffed animals, and candy to the Newborn Intensive Care Unit. That support can also include comments that welcome our children into the world, like the nurse who says “Congratulations! You’re baby is precious,” or comments that shape our understanding about disability, like a friend who shares, “My cousin has Down syndrome, and she’s an important part of our family. We love her.”

Please share in our comments the words, actions, or attitudes of those around you who gave the best of themselves and in turn helped you cope or look forward to a bright future. If you are on Facebook, you might also want to post your comment to your Facebook status and link to this blog post. Or post a thank you (sample linked below) in your Facebook status.

Booklet for Friends and Relatives: HERE
Sample thank you letter to the person you appreciate: HERE

(Note: We recognize that some things that bring comfort to some people may not help others because of the diversity of the personalities and beliefs of our expectant parents. For general guidelines, see our Relatives booklet linked above. Supporters should tailor their comments and support to match what they know about the personalities of the expectant parents.)

Online Communities for Pregnant Moms

August 15, 2013 in Support

Between online forums, Facebook, Pinterest, etc., there are many online resources to provide a sense of community and meet some of the unique needs of pregnant moms expecting a baby with Down syndrome. These interactive online communities can help expectant parents who might have questions about medical issues, sharing the news with friends and family, or who simply want to share the excitement over ultrasound and newborn photos of their little ones.

Nancy Iannone, Co-Author of Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome says, “What we hear most often from pregnant moms is that one of the biggest issues is that feeling of isolation even when surrounded by friends and family … because there’s no one around you who has been through that experience of receiving a prenatal Down syndrome diagnosis. So, many parents find it helpful to get support from others who have been through a similar experience or who are going through the experience with them.”

There are a number of interactive communities, and some parents opt to pick one that meets their needs while others use all of them to be surrounded by support.

One of the most robust online forums for those receiving a prenatal diagnosis of Down syndrome is the Down Syndrome Pregnancy BabyCenter board. The board was created in 2006 and has almost 1300 members. The group “owners” are original DSP founders Nancy Iannone, Missy Skavlem, and Amy Geoffrey who are all moms who received a confirmed prenatal diagnosis or high chances with blood tests, and they are leaders in the Down syndrome community. They provide researched information and support for pregnant moms in response to specific topics and questions and also connect pregnant parents with other parents who have faced similar medical issues, who have similar beliefs or backgrounds, or who live in the same geographic areas.

Some of the advantages of this board include the significant experience of the board moderators, the ability for users to remain anonymous or just “observe” the public conversations, and the many resources BabyCenter offers all pregnant moms. However, the online conversations can be viewed publicly unless sent as a private message, and it can be more difficult to share photos.

Other BabyCenter boards include the following:

Some of the Facebook communities for pregnant moms expecting a baby with Down syndrome include the following:

  • T21 Pregnancy Support Group
  • Has over a hundred members and is run by Joelle Kelly, a mum from Australia who received a prenatal diagnosis. This group actively provides interactive support to pregnant moms continuing a pregnancy after learning about a prenatal diagnosis of Down syndrome.

  • Down Syndrome Pregnancy Group
  • Primarily offers information about current trends in prenatal testing, news about people with Down syndrome, and references to popular pregnancy blog posts from around the web.

The advantages of these groups are that they are private, it’s easy to share and view photos, and you can make friends with people who have revealed their identities. However, it might not suit the needs of those who prefer to receive anonymous support or who aren’t ready for groups related to Down syndrome to show up in their profiles.

Another online tool is the Sidelines National Support Network that provides “international support for women and their families experiencing complicated pregnancies and premature births.” The advantages of Sidelines are that it includes pregnant women with a diverse array of complicated pregnancies and offers many community forums; however, it is not specific to Down syndrome and does not have resources about Down syndrome.

Other options include discussion forums, Twitter accounts, and Facebook pages hosted by local groups. You can find your local Down syndrome organization with the Down Syndrome Affiliates in Action “Find an Affiliate” tool. The advantages of interactive communities sponsored by local groups are that you can get answers to local questions like recommendations for pediatricians or where to find the nearest playgroup. You can also usually remain anonymous when viewing the Facebook page or Twitter feed.

Other online communities where you can find Down Syndrome Pregnancy include Twitter and Pinterest. We usually post news articles, prenatal testing updates, and popular pregnancy blog posts on our Twitter feed, and our Pinterest boards include Baby Shower Ideas, Books We Love, Blogs We Love, Prenatal Testing, Prenatal Websites, Toys for Baby, Playing with Baby, Mom Style, Baby Style, and Great Websites.

What online communities have you found to be helpful? What does it mean to you to get support from other moms on a similar journey?

What will baby need? (It’s a Baby Shower!)

July 31, 2013 in Friends and Family, Future

Katie Ryder with her grandmother Lona Kewley

Experienced moms, help our expectant parents with their baby registry! What items did you use during infancy that will be a big help for new parents of a baby with Down syndrome? Expectant moms, ask follow-up questions, or talk about the supplies you have already.

Lets get the list started with a few of our “must have” items:

Two products for congestion are an absolute must, the NoseFrida, otherwise known as the snot sucker (I know, it looks gross, but trust us), and saline mist.

And since research shows the benefits of sign language for our kids, put Signing Time videos on your list. The videos are fun, the songs are catchy, and your other kids will enjoy them too.

Finally, every parent of a child with Down syndrome should have a copy of Will Schermerhorn’s DVD “Down Syndrome – The First 18 Months.”  Check out Will’s website to order the film.

There are many items that can be specifically helpful for babies with Down syndrome, but experienced parents of infants with Down syndrome also emphasize that they need or want the same things any baby needs. So, please help us by sharing items you found particularly useful for a baby with Down syndrome and also those things you found generally helpful, wonderful, beautiful, or clever.

We have lots of great suggestions below and would love to hear more!

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