Posts Tagged ‘Down syndrome answers’

Organization & Preparedness 101

November 21, 2014 in Birth Plans, Future, Health Issues, Medical Provider, Post-Diagnosis Health

Pregnancy post-diagnosis is often a blur of medical appointments, especially late in pregnancy.  Expectant parents receiving co-care from several health care professionals may see multiple doctors in an obstetrics practice and multiple doctors in a maternal-fetal medicine practice.  There may be a lists of tests, lists of questions, scraps of paper with phone numbers.  We highly recommend making an organizational plan to keep track of all of your medical information during pregnancy.  Parents should purchase a a binder/ notebook to keep track of dates, medications, doctors, tests, results, questions, and answers. Include your birth plan as well.  Ask your doctors for copies of your medical records, especially the karyotype, which shows the baby’s chromosome count.

You may also want to start a binder for the baby, starting with the karyotype and a summary of the pregnancy.  Keep track of all medical personnel, tests, etc. connected with the baby in this binder.  Some items which may be helpful to start are the following:

The Down Syndrome Growth Charts

The Down Syndrome Health Checklist
(The health guidelines have been recently updated – download HERE)

The Down Syndrome Developmental Charts

Blogger Ria provides amazing advice on creating an organizational system, with extremely helpful links and step-by-step instructions.

Diagnosis Day: Parents, what would you say to your past self?

October 23, 2014 in Emotions, Future

Taylor loves ballet!

For so many of us, the day we received a diagnosis for our child with Down syndrome is a day of shock and sorrow. We moved forward from that time, and have grown along with our children. In the book The Time Traveler’s Wife, the main character travels back in time, and at one point tells his doctor that the doctor’s unborn child has Down syndrome. “He’s a wonderful boy,” is the attempt at reassurance from the time traveling friend. Having spoken to so many expectant parents, I can say that this bland generalization is not enough for those facing that raw time of fear of the great unknown. Parents often thirst for so much more.

We talk about “what to expect” so much on our blog and discussion board on Baby Center. NICU stay, prenatal monitoring, medical care, government services – the list goes on. Practical. Informative. Useful. But of course information is simply not enough. We need to mix it up with some personal experience, which we do through our blog comments and discussion board posts. Experienced parents, if you could travel back in time and meet yourself on that day, what would you say? What would your past self need to hear about your child, your life, your family?

Mom and blogger Patti provides a particularly beautiful glimpse into the life of a family which has a child with Down syndrome here.

Darci Howard of BYU tv’s Fresh Take also interviews blogger and author Kelle Hampton, who is also one of our pregnancy book photographers. Expectant parents grappling with intense emotions may identify with Kelle’s account of those first few hours after she learned baby Nella had Down syndrome. But keep watching, and you will hear of the transformation of those feelings, and catch a glimpse of cute baby Nella at the end of the interview.

Interview: http://byutv.org/watch/8303febf-8c13-4a43-a645-99439d54f350 (starting at 17 minutes)

Kelle’s blog: http://www.kellehampton.com/

Kelle’s story of Nella’s birth: http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

You can also read stories from other moms and dads around the world who received a prenatal or postnatal diagnosis at Unexpected Stories of a Down Syndrome Diagnosis.

Slice of Life

March 21, 2014 in Future

Many expectant parents would like to see a glimpse of the future with their child with Down syndrome, beyond the lists of medical possibilities. While each family and individual with Down syndrome is unique, one thing most of us can agree on is that the reality of living with someone with Down syndrome is much different than we imagined on that diagnosis day. And that reality is often remarkably ordinary—including soccer practice, sibling squabbles, birthday parties, and snuggles and popcorn during a movie.

While it’s true that some time usually needs to be devoted to speech or physical therapy visits, those visits become part of a daily routine. Speech therapists who come to our homes often become dear friends, and physical therapy appointments may become that time of day where we run to the grocery store. And while it’s also true that our children may have medical issues, some more or less than others, the time spent dealing with those medical conditions is usually a very small slice of a much bigger pie.

Once our children with Down syndrome start developing their own identities, it can sometimes be shocking how they shed those identities we originally envision as new and expectant parents. When my own son was born, I remember writing down everything that scared me: people making fun of him, having other children, having him live with us as an adult, and losing the vision of a child going to college and having a career.

Now at 14, he’s very popular — boys from school show up at my house to play basketball and give him “bro hugs” at the bike trail when they run into him. He has two younger sisters who are 11 and 7, and our biggest challenge there is making sure the girls don’t go in his room without asking and making sure he doesn’t call his younger sisters “embarrassing” and “annoying.” And even though I’m fairly certain he’ll need some help as an adult, he already keeps bags packed in his closet hoping that he’ll get to move to the beach with his best friend someday. There are also now 220 college programs for students with developmental disabilities, and Andy is determined to go and has already shown real promise as a photographer (who has already had an exhibit in Russia and won the PTA Reflections Photography contest for the past 4 years). We also spend our summers as a family on the mountain bike trails.

Andy Bites Edit from southernj on Vimeo.

If you had told me all of this when I was a scared 23-year-old first receiving the diagnosis, I never could have pictured that this was what the future held.

Experienced parents, will you share a peek into your lives?  Start with your child’s name and age, and give our expectant parents a snapshot of your present to help them envision their future.  Expectant parents are welcome to ask questions as well.

Read about “A Day in the Life” of other moms here:

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.

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.

What Parents Wish They’d Known

May 1, 2013 in Emotions, Future, Resources

Kathy Soper collected thoughts from experienced parents, and through the generosity of publisher Woodbine House, this collection of parental advice is available free on the Woodbine House website.

We do link to this booklet in our book, but an extra tidbit is that my thoughts about my daughter Gabby are recorded there. What did I wish I would have known about Gabby? Check out my quote from the booklet:

I wish I’d known that I would say and feel so often, “You’re so smart!” or “You are the cutest kid in the whole world!” I wish I’d known I would use words like “sparkling,” “vivacious,” and “infectious laughter” when describing my child. I underestimated her.

While you are over at Woodbine House, check out the amazing list of Down syndrome resources that they have available.

Blogger Patti also wrote a Mother’s Day Celebration where experienced moms share with you what they wish you could know about life on the other side of the fence: A Perfect Lily: Mother’s Day message . . . from our heart to yours

Materiales en español

February 1, 2013 in Resources, Spanish, Support

Para nuestros padres expectantes que hablan español y para sus parientes, hay una variedad de materiales y recursos en español.

Los folletos de la compañía Lettercase tienen texto en inglés y español:
http://lettercase.org/

Recientemente esta página de la red fue recomendada por un líder de nuestro grupo:
http://www.down21.org/web_n/index.php?option=com_content&view=section&id=8&Itemid=37

Otro recurso es Brighter Tomorrows – materiales están disponible en inglés y español:
http://www.brightertomorrows.org/

También, la NDSS (la Sociedad Internacional del Síndrome de Down) tiene información en español:
http://www.ndsccenter.org/en-espanol/

Adicionalmente, hay muchos grupos del Síndrome de Down en muchos de los países de habla español. Familias quizás puedan hallar útil buscar en la página de la red de Gifts para encontrar grupos en el país de origen (los países están en orden alfabética):
http://giftsds.segullah.org/down-syndrome-links/international-links/

“Babies with Down Syndrome” (Bebes con Síndrome Down) está disponible en español:
http://www.woodbinehouse.com/main.asp_Q_product_id_E_978-1-890627-99-7_A_.asp

Canal Down21.org

Revista Síndrome de Down

Libro de lectura y escritura

“Síndrome de Down: Vida adulta”

Materials in Spanish

February 1, 2013 in Resources, Spanish, Support


For our Spanish-speaking expectant parents, and for relatives who speak Spanish, there are a variety of Spanish language materials and resources:

The Lettercase booklets have both English and Spanish text:
http://lettercase.org/

Recently this website was recommended by a group leader: http://www.down21.org/web_n/index.php?option=com_content&view=section&id=8&Itemid=37

Another resource is Brighter Tomorrows – materials are available in both English and Spanish:
http://www.brightertomorrows.org/

Also, the NDSS has information in Spanish:

The NDSC has information in Spanish as well:
http://giftsds.segullah.org/down-syndrome-links/international-links/

“Babies with Down Syndrome” is available in Spanish:
http://www.woodbinehouse.com/main.asp_Q_product_id_E_978-1-890627-99-7_A_.asp

Canal Down21.org

Revista Síndrome de Down

Libro de lectura y escritura

“Síndrome de Down: Vida adulta”

Calling all heart moms!

August 18, 2011 in Health Issues, Medical Provider, Post-Diagnosis Health

Does your unborn baby have a heart defect? Or are you an experienced mom who has faced her baby’s open-heart surgery? Many expectant parents are worried about the time period between birth and surgery. Many worry about the symptoms associated with heart defects, the medications, and feeding issues. Newborn hospital experiences may vary. Cardiologists may differ in their approaches to public outings and germ exposure. Expectant moms, what are your questions? Experienced moms, share your stories.

New healthcare guidelines (pediatrics)

July 29, 2011 in Future, Health Issues, Medical Provider, News, Resources

The American Academy of Pediatrics has released new guidelines for pediatricians who have patients with Down syndrome. These guidelines are updated from those provided in our pregnancy book, so expectant parents should have a copy of the new guidelines and provide a copy to their pediatrician if he or she does not have them.

You can download a PDF of the new guidelines here: LINK HERE.

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