Gifts

News upon GIFTS First Anniversary

2008-05-15T14:17:00.000-05:00

It's now been one year since Gifts was released, and we've received tremendous support from readers like you. So far we've sold over 14 thousand copies. With the money earned, we've bought thousands more copies that have been distributed to medical professionals, including the American College of Obstetricians and Gynecologists, and the National Society of Genetic Counselors. With your help, Gifts II will be another big success!

The submission guidelines for Gifts II can be found at giftsds.segullah.org/gifts-volume-ii/.

Woodbine House is hosting a cover photo contest for this book. You can find guidelines here: www.woodbinehouse.com/DS_photo-contest.asp

The Gifts website (www.giftsds.segullah.org) has been redesigned to include several interactive features, including:

a spot featuring incoming links (bottom middle of home page)

DS blog sampler giftsds.segullah.org/personal-blogs/ (also featured at the bottom left of the home page)

an expanded links list, with a new "media" category giftsds.segullah.org/down-syndrome-links/

an easier-to-use feedback page: giftsds.segullah.org/feedback/.

You can be part of the site by linking to us on your blog from time to time, adding your blog to our sampler, suggesting links for our links page, and adding feedback to our feedback page. Instructions can be found by following the links above.

Thank you for your continuing support!

Kathryn Lynard Soper
Gifts Editor

Cover Photo Contest for Gifts Volume II

2008-05-03T23:55:00.003-05:00

Woodbine House, publisher of Gifts, is sponsoring a Cover Photo Contest. They're looking for Color or B&W photos of children with Down syndrome from early childhood through adolescence. Candid, close-up photos are sought, of a single child, or pair of children (at least one with Down syndrome), or a child and adult. Outdoor photos preferred. A prize of $250 will be awarded to the photographer of the winning photo.

More details at the Woodbine House site.

Contest deadline is October 15, 2008.

Gifts is award winning.

2008-05-03T23:44:00.004-05:00

Gifts, Mothers Reflect on How Children with Down Syndrome Have Enriched Their Lives has been awarded a 2008 National Parenting Publications Award (NAPPA) Gold Award.

The NAPPA Parenting Resources winners showcase the best in books, CDs, baby gear and innovative products that help make parenting easier and more fun.

and,

Gifts has been awarded a 2008 Mom's Choice Award by The Just For Mom Foundation. The award honors excellence in family-friendly media, products, and services.

UTAH BARNES AND NOBLE BOOK FAIR

2007-10-03T14:29:00.000-05:00

SUPPORT UTAH PARENTS OF CHILDREN WITH DOWN SYNDROME!

** Shop at any Utah Barnes and Noble bookstore on SATURDAY OCTOBER 13 (all day).

** Present this bookfair voucher when you make your purchase.

** Barnes and Noble will donate up to 25% of the sale to the Gifts Outreach program.

** Gifts Outreach will use these funds to provide copies of GIFTS for Utah Down syndrome organizations.

** These organizations will distribute free books to new parents and medical professionals statewide!

Special events will be held at the following stores:

Layton (1780 North Woodland Park Drive)

11 a.m. GIFTS book signing with editor Kathryn Lynard Soper

1 p.m. Down syndrome storytime

2 p.m. Starbright dancers

Bountiful (340 S. 500 W.)

1 p.m. Down syndrome storytime

Sugarhouse (1104 E 2100 S)

1 p.m. GIFTS book signing with editor Kathryn Lynard Soper

1 p.m. Down syndrome storytime

Fort Union (7119 S 1300 E)

1 p.m. Down syndrome storytime

Orem (330 E 1300 S)

1 p.m. Down syndrome storytime

3 p.m. GIFTS book signing with editor Kathryn Lynard Soper

If this event is successful, Barnes and Noble will consider a regional or even nationwide book fair event in Spring 2008.

Thank you for supporting Utah's families!

Minnesota Book signing

2007-08-22T15:32:00.000-05:00

Come to the GIFTS book signing at Barnes & Noble in the Mall of America, located in Bloomington, MN.

Date: Wednesday, September 5 at 7:00pm

Participating authors:

Ann Bremer (Chapter 20, The School of Life)
Leah Spring (Chapter 31, Enjoying the Ride)
Emily Zeid (Chapter 38, Loving Emma Jayne)

More news to enjoy

2007-08-22T15:27:00.000-05:00

Read about Nicol Hudson (Chapter 49, The Eighth Grade Dance) and her son Alex in the East County Times

Read about Elizabeth Price (Chapter 43, When the Other Shoe Drops) and her son Jude in the Fort Wayne Journal Gazette

Read about Nancy Iannone (Chapter 30, A Hopeful Future) and her daughter Gabriella in the Courier Post.

Reviews and other good reads

2007-07-10T14:22:00.001-05:00

Go read this nice review of GIFTS in Opinionated Parent. Then enjoy Jennifer Graf Groneberg's weekly column "A Little More" at ParentDish.com, and Kathryn Lynard Soper's essay about her son Thomas at Literary Mama.

American Express Project

2007-07-06T09:42:00.000-05:00

If you are an American Express cardholder, PLEASE vote!

If your not, please consider applying, and spread the word. Most of the contributing authors for Gifts have bought as many copies of the book as we can afford and donated them to our own Obstetricians, but there are so many out there!

Make a vote for Awareness Can Build a Family.

Happy Birthday, USA

2007-07-04T14:39:00.000-05:00

Here's a fantastic way to celebrate freedom: Vote in the American Express Members Project.

Fifty community service proposals are in the running to receive $5 million in funding from AmEx. The current top runner is a Down syndrome awareness proposal initiated by the National Down Syndrome Congress, called "Awareness Can Build A Family." Voting is now underway to select the top 25 proposals; there will be two more rounds of voting, and the winning proposal will be announced on August 7.

Here's the Down syndrome proposal:

Awareness Can Build a Family

Yearly, thousands of women are tested to determine if the child they carry has Down syndrome. A positive answer often portrays a bleak future in which their child will impose terrible burdens and dreams die.

Many medical professionals have scant knowledge of Down syndrome and are unable to comfort or educate.

Their messages tag people with Down syndrome as having no value, implying there is no place for them in our world.

The tragic result: an astonishing 90% of pregnancies involving diagnosis of Down syndrome are terminated.

In fact, there is much to celebrate. Children with Down syndrome excel in school, participating in sports and graduating. As adults they live independent, rewarding lives. Ask a parent - you will hear of joy, fulfillment.

My Members Project, "Awareness Can Build a Family," would use public service television, ads, booklets and more to tell that people with Down syndrome are more like all of us than not and are of priceless value.

If you agree with all of that, please vote as soon as possible - the first round closes July 15, 2007

What this proposal doesn't mention is that this year, 4 million American women will be offered first-trimester prenatal testing for Down syndrome, and the majority of them will not receive adequate accompanying education about Down syndrome.

If the NDSC's proposal wins the competition, resources like GIFTS will be widely distributed throughout the nation. Imagine this: a copy of the book in every OB/GYN office! It's a very real possibility.

You need to be an AmEx member to vote. Please consider signing up for a card, as I did, so that you can participate. Online application takes one minute, and there's no fee.

And what does this have to do with freedom? By voting, you use your power as a citizen to determine how a big chunk of American change is spent. And by choosing "Awareness Can Build A Family," you make it possible for American families to truly exercise their freedom of choice. How so?

Any thinking person understands that accurate, current, balanced information is a vital component of decision making. Our nation has determined that women are free to choose whether to terminate pregnancy, but currently the millions of women receiving DS testing lack the education needed to make an informed choice. With with $5 million in funds, the NDSC can help ensure that women choose with the power born of knowledge.

And you can help make that happen. Vote today! And if you're not a member yet, sign up.

Barnes & Noble Events

2007-06-29T10:42:00.000-05:00

We're pleased to announce the following book signing events at Barnes & Noble bookstores!

CALIFORNIA
Costa Mesa Friday, October 26th
Metro Pointe 901 B South Coast Drive
Sandra McElwee (Chapter 12, "Who's Winning?")

NEW YORK
Carle Place September 7
91 Old Country Rd.
Robin Roach (Chapter 5, "Oh, Yeah?")

PENNSYLVANIA
Camp Hill August 18
Cori Guillaume (Chapter 35, "Green Onion") and Jessica Capitani (Chapter 2, "What To Do With A Boy")

UTAH
Sandy June 29, 6-8 p.m.
10180 S. State St.

Orem June 30, 1-3 p.m.
330 East 1300 South

Kathryn Lynard Soper (Editor)

GIFTS in the news

2007-06-18T08:33:00.000-05:00

GIFTS is catching the eye of media across the United States!

Several of our contributors were featured in a TV news story by Anita Brinkman aired by ABC affliliate WPVI in Philadelphia.

Andrea Morehead of WTHR in Indianapolis conducted a 4-part series called "Beyond the Diganosis" series. Part 4 includes information about GIFTS.

Editor Kathryn Lynard Soper and her son Thomas have been featured in 2 Salt Lake City newspapers, the Deseret News and the Salt Lake Tribune.

Frances Lowe's article, "The Gift of a Son," featuring contributing author Jessica Capitani, was published in Virginia's Winchester Star.

More GIFTS sightings to come!

DS Testing Petition

2007-06-18T08:28:00.000-05:00

Noelle, mom to Jaden, who is 2 1/2 years old and has Down syndrome, is collecting signatures for an online petition concerning delivery of a prenatal diagnosis. For more information, including an opportunity to sign the petition, click here.

http://www.ipetitions.com/petition/prenataldiagnosis/

A Wonderful Thank You

2007-06-04T22:44:00.000-05:00

June 3, 2007

On May 29, and May 30, the Southern New Jersey Perinatal Cooperative along with Virtua hospital sponsored the presentation, Emotionally Supporting the Family of a Newborn with Down syndrome, at two different Virtua locations.

The presentation goal:

Delivering or anticipating the birth of, a child with Down syndrome is an unexpected outcome for which families need and deserve our most positive efforts. This conference presented from the perspective of healthcare professionals who have experienced this life-changing event, will enable providers to provide compassionate emotional support to the families of these special children, while alleviating some of the fear that new parents of babies with Down syndrome feel.

We had roughly 100 attendees at both locations, and they were a HUGE success.

One of the local parents association here in Southern New Jersey that supports families who have a child with Down syndrome, named BUDS, or Bringing Up Down Syndrome and Nancy Iannone, mom and Down syndrome advocate, provided 100 copies of the book, Gifts for our attendees. We were able to give every attendee a free copy of the book. I overheard several people state how wonderful it was to be able to have this book, and share it with their patients. We also provided dinner, and many would get their dinner, and then sit at their table and read their book. Again it was a meaningful and informative event and we thank you for the support that made it such a well-received success.

Thank you Nancy for all of your hard work, spearheading the fundraiser that helped you with your endeavor of providing us the 100 copies of Gifts.

Thank you to everyone at BUDS who also helped with this endeavor.

The book is like having many parents there, to share their stories, yet the attendees can read them at their own pace, therefore, getting even more from the presentation.

I also have a copy on our L&D unit.

Sincerely,

Deb Dougherty RN

Virtua Memorial Hospital
Labor and Delivery
175 Madison Avenue
Mt Holly, NJ 08640

Barnes & Noble Events

2007-06-01T13:33:00.000-05:00

We're pleased to announce the following book signing events at Barnes & Noble bookstores!

CALIFORNIA
Costa Mesa Friday, October 26th
Barnes and Noble Metro Pointe
901 B South Coast Drive
Sandra McElwee (Chapter 12, "Who's Winning?")

NEW YORK
Carle Place September 7
91 Old Country Rd.
Robin Roach (Chapter 5, "Oh, Yeah?")

UTAH
Sandy June 29, 6-8 p.m.
10180 S. State St.

Orem June 30, 1-3 p.m.
330 East 1300 South

Kathryn Lynard Soper (Editor)

VIRGINIA
Midlothian June 24, 2-5 p.m.
1200 Huguenot Rd.
Beth Crawford (Chapter 29, "The Buddha Bean")

Ohio Book Signing Event

2007-06-01T13:28:00.000-05:00

On Sunday June 10 at 2 p.m., contributing author Kelly Anderson ("When There's A Will, There's A Way") will be signing copies of GIFTS at Hattie's Cafe, 164 North Main Street, Hudson, OH. The event is being sponsored by The Learned Owl, a bookstore located close by.

Barnes & Noble Promotion!

2007-04-17T16:29:00.001-05:00

The new edition of GIFTS will be featured on the New Release table at Barnes & Noble from June 5 through June 18! That means the book will be placed on a table at the front of stores along with other new nonfiction. Then, in July and August, GIFTS will be given top-shelf placement in the Children with Special Needs section of the store.

These are fantastic publicity opportunities that could have a big impact on the future of GIFTS. The bookselling industry works by a "sink or swim" mentality. If GIFTS sells well during its debut period, it will have a longer, more visible existence in Barnes & Noble, and will be more likely to have a strong presence in other bookselling venues as well.

Many of us in the Down syndrome community went looking for a book just like GIFTS after our child's diagnosis, and couldn't find one. By purchasing copies of GIFTS and encouraging others to do the same, we can ensure that the thousands of parents who will be in our shoes in the coming months and years will be able to find the support they need.

We are grateful to those who purchased copies of the first edition of GIFTS. The royalties have been used to provide copies of the book to Down syndrome support groups across the nation; we hope that these organizations will buy multiple copies of the book to give to new parents. But even if you already own a copy of the book and don't desire to own another, there are many ways you can put extra copies to good use. Donate a copy to your local library, hospital or clinic, and/or DS support group. Give copies to friends or family members. The royalties from these sales will be used to get books in the hands of parents in need.

Each of us can make a difference by buying and sharing copies of GIFTS. Head into your local Barnes & Noble store in June and put your consumer dollar to a worthy cause! Together we can convince the world that the life of a child with Down syndrome is something to celebrate.

Kathryn Lynard Soper, Editor

My name is Matthew

2007-03-30T12:54:00.000-05:00

by Michelle Adams

Credits: "My Funky Studio Mega Kit" by Gina Cabrera for Digital Design Essentials. "Hello" tag by Jackie Eckles for Designer Digitals Ad Challenge Freebie. "Date Stamps" by Amber Clegg for ScrapArtist. Font is DB Michelle Exclusive by Darcy Baldwin for Blue Flombingo.

Journaling reads: I am a sweet, loving little 5-year-old boy. I have Down syndrome. Please do not underestimate me because of it. For you see, I may have Down syndrome, but it doesn’t have me! I am an amazing little person, if you would just take the time to get to know me. For just like anyone else - I learn, I grow, I laugh, I love, I get upset, I feel, I remember, I get mad, I hear, I live...… I can do anything, become anything that I want to, for you see - my parents believe in me. They fully expect me to drive, to have girlfriends, to go to college, to live on my own, to live my life to the fullest! And you know what? Because they believe in me, I believe it too! It may take me a little longer to achieve my goal. It may take a little more help to get there, but get there I can! I can with the help and belief of those around me - my family, my friends, my therapists, my teachers. I can with a little help from strangers too. Those that will take the time to look at me. To really look at me. To look into my eyes and see the potential that is lying in there. The potential that my parents see. The potential that they will fight tooth and nail to help reach it’s fullest. And I will get there, you’ll see. So, please don’t underestimate me. For I have Down syndrome, but it doesn’t have me!

To say that I am a little nervous about Matthew's transition from the sheltered world of the preschool he has been in for the last 2.5 years to Kindergarten next year, is probally an understatement. We have the 1st transition meeting at our home school (YAY!) next Monday. I am aprehensive about it all - are we making the right choice for him? Is he going to flourish as he has? Are parents/students/teachers going to really embrace him or is it going to just be a nice to our face thing? There's no way of knowing unless we push forward and move on. I've worried so much about so many things in the past and they have all turned out all right, so I'm just trusting that this will too...

Happy World Down Syndrome Day!

2007-03-21T12:07:00.000-05:00

by Deborah Minner

March 21st is World Down Syndrome Day, chosen because the date 3-21 is synonymous with the genetic condition that causes Down Syndrome- 3 sets of the 21st chromosome.

People around the world are doing different things to spread awareness about Down syndrome today. I tried to do some advocating in my community by initiating a Dress UP for Down syndrome day. I made posters encouraging people to wear blue & yellow today and make a donation to the Down Syndrome Society of Wichita. If they made a donation of any amount, they got a button that says "I'm Dressed UP for Down syndrome" to wear today. The donations are going to be used to buy copies of the book Gifts: Mothers Reflect on How Children with Down Syndrome Enrich their Lives. These books will be donated to the OB/GYNs, PEDs, hospitals and libraries in my area.

Down syndrome was something I knew very little about before Sean was born. In fact, when I was told that he probably had Down syndrome, the doctor asked me if I knew what that meant. The only thing I could think of was Corky Sherwood from Life Goes On. I couldn't mesh in my head how my baby was going to "change" to look like Corky when he grew up instead of like my family. I thought people with Down syndrome all looked like Corky Sherwood and not like their family. Seeing photos of other kids and hearing about what they did, how the played, what they liked made me realize that not all people with Down syndrome are the same. Sean has 23 chromosomes like me, 23 chromosomes like Doug and only 1 chromosome that is different than us. Once I understood that, I was able to connect with him and stop feeling like someone had told me I'd given birth to someone so alien to me.

I really hope that the Gifts book is available to huge numbers of doctors, therapists, nurses, parents, politicians, family planning groups and the general public. It is a beautiful book that really helps bring understanding to what life is like with a child with Down syndrome. I feel very lucky to be included in it and I hope that our story helps someone.

Today I feel really blessed to have Sean in my life; he brings me so much joy. His smile lights up a room, his hugs warm your soul, and his eyes are a mirror to God. He and I will continue to look forward to what the world has in store for us and face the challenges that come our way together.

Kudos for Gifts

2007-03-15T15:49:00.000-05:00

These wonderful quotes will be included on the back cover of the new edition of Gifts.

***
“This fine book helps dispel the fear and misinformation about Down syndrome that many parents and prospective parents face. As these deft essays convey, the world would be a sweeter place with more Down syndrome citizens, not fewer.”

--George F. Will

“Gifts is honest and life affirming, a chorus of mothers proclaiming what every obstetrician and gynecologist must learn - that life is a gift and an extra chromosome is not the end of the world.”

--Beverly Beckham, columnist, The Boston Globe

“Through Gifts we hear the powerful voices of mothers who said "yes" when others might have been saying "no." These mothers take us on their journey filled with wonder, courage, and the belief that children with Down syndrome can and will succeed.”

--Brian G. Skotko, M.D., M.P.P.

Physician, Children's Hospital Boston and Boston Medical Center

Author, Common Threads: Celebrating Life with Down Syndrome.

***

Read Mr. Will's Newsweek column and Ms. Beckham's Boston Globe column about the new guidelines for prenatal screening for Down syndrome.

Giving Gifts

2007-03-13T19:36:00.000-05:00

By Stephanie Bissol

Our family donated a copy of the book "Gifts" to our school library. I was also able to read "Blue Ribbon. First Place" to the 4th grade class of Afton Elementary and Manor Elementary in Pennsbury School District in the suburbs of Philadelphia.

Here is a picture of my son Joey with the Librarian at the ceremony in November.

Months later I received this email:

Dear Stephanie,

Hi there. Let me introduce myself. I am "Sue Berner -1st grade teacher at Afton" I am a grandmother to our beautiful Princess Leah who is 20 months old and who has Down Syndrome. Needless to say, 20 months ago, seems like many years ago ...we've been through so much in such a short amount of time. Would love to chat with you. I didn't want to call you as I'm sure you have a very busy evening schedule with the three kids. If you could call me whenever it is convenient for you, it would be much appreciated.(Probably late in the eve.)

I just read the book ,Gifts, that you donated to the Afton Library and found each and every story so inspirational. Leah is now going thru much of what you said about Megan.(She's belly-crawling) I loaned it to my daughter, Heather, who lives in Maryland. When I mentioned your name to her, she said it was familiar from the chat line but she never realized you were from Yardley. Heather is a s tay at home Mom (a retired lawyer) of 2 children (Jonah is almost 4).She's 32 years old. She has been involved with a DS group in her county, but there are no children around Leah's age. (They are all older, and mainly working moms).

I'm hopeful that through your involvement with DS, you might be able to guide Heather in a direction to find others in the North Potomac.Md. area with kids around Leah's age. I am also wondering if there is a grandparents group in our area that my husband and I could get involved with. (I live in Yardley, also). I would love to meet you and Megan and possibly when Heather and family visit, she could meet your family also.

Best Regards,

Sue Berner

Gifts is well on its way to touching many of lives. I am very lucky to have received this email as it has made my journey on this path worth taking, if only to help 1 person, it is so worth it to me.

This experience reminds me of "The Story of the Starfish"

A father and his son were walking along a deserted beach after a particularly high tide had washed up thousands of starfish on to the sand.

The boy started picking them up and throwing them back into the water one by one.

The father quizzed his son saying "You can't possibly save them all, there are millions, you can't possibly make a difference."

The boy smiled, bent down and picked up another starfish and as he threw it back into the sea, he replied, "Made a difference to that one."

Gabriella Iannone to Receive Award

2007-03-12T22:56:00.000-05:00

Gifts contributor Nancy Iannone (A Hopeful Future) would like to share that her daughter, Gabriella Iannone, who just turned two will receive her first award on March 21, 2007.

The Gloucester County Special Services School District provides Early Intervention services for eligible children in Gloucester County. Thay provide services for a large number of families.

Each year, the Board of Education honors one family for excellent progress in the Early Intervention Program. Due to her amazing accomplishments in Early Intervention, Gabriella will receive a certificate of recognition and a small gift at a ceremony on March 21.

Helping Latin families

2007-03-10T13:47:00.001-05:00

Down syndrome group aimed at Spanish speakers
By Loni Nannini

SPECIAL TO THE ARIZONA DAILY STAR

Six years ago, Charo Boggian's son, Zoe, was born with Down syndrome.

The new mother felt that no one really understood when she wanted to express her feelings at a support group several months later. She was right: Boggian, a native of Argentina, spoke no English.

"The most important thing when you have a special-needs child you didn't expect to have is to be able to talk about it," said Boggian, who now is fluent in English.

She knew there must be other Spanish-speaking parents, however, who shared her feelings of sadness, guilt and difficulty in accepting her baby. "If you don't speak English in this country, you can't express yourself, and that was very bad for me."

She didn't have far to look. After approaching a nurse at University Medical Center about starting a support group for Latin families of babies with Down syndrome, Crecer Con Amor - Growing Up With Love - was born immediately.

"When we met for the first time, we were three moms and it was amazing," said Boggian, now 33. "I started to speak about my feelings, and one mom said, 'I feel the same way, but I never wanted to say this because people would think I am crazy or don't love my baby, and I do.'

"It was amazing to talk about our feelings and not feel guilty and be afraid people would think we were bad moms. It is positive to have a group where you can speak in your language and tell others about these feelings," she added.

Crecer Con Amor also acts as a link to resources in the community, assisting families in finding available therapies, services and schools for their children. Boggian said that speech, physical and occupational therapies are particularly crucial to children with Down syndrome to aid development in the first years of life.

Boggian said that many Latin parents are unfamiliar with the chromosomal disorder and have no idea how to proceed, primarily because of cultural differences. In their native countries, special-needs children are often taboo: Many don't attend school, and they may not even be allowed in public.

Boggian is determined to educate families about the many local opportunities available for children with Down syndrome and to make parents aware that they play the principal role in their child's therapy and learning.

"When I meet with Spanish families, the first thing I tell them in the hospital is that here things are different," she said. "It is not like our country. Down syndrome children go to school, they take the bus, they work and they even have the possibility to access college. . . . I tell them that if you as a parent make them confident, they can learn. You can't try one time to teach them something. You must try two times, four times, whatever, but they will learn to do it, and that is a very important message."

To reinforce that message, Crecer Con Amor has published a book by the same title. Written in Spanish, "Crecer Con Amor" shares the stories, pictures and experiences of 22 families as well as medical and developmental information. The color book is distributed free through local hospitals.

Haide Lopez said the book offered her and her husband, Ramon Beltran, information and hope when her twins, Yahir and Arath Beltran-Lopez, were born three years ago. Arath has Down syndrome.

"When my child was born, we felt very sad that first week," she said. "We thought we were the only people having this kind of child, and when Charo visited us and we knew about this group, we knew weren't alone."

Lopez said the emotional support can be particularly helpful early on, since many Down syndrome children suffer from heart or lung conditions or other medical problems. She said that the social experiences have also been wonderful: The families meet monthly and have celebrations during the holidays.

Boggian, who was a lawyer in Argentina and is completing a paralegal course at Pima Community College, now considers Crecer Con Amor her "little mission." With aspirations to obtain a degree in women's studies and eventually law at the University of Arizona, she plans to apply the same perseverance to her studies that she applies to her crusade to educate families about Down syndrome. She has come to believe that God gives Down syndrome babies to people who are special, and she loves watching the transformation process as parents recognize the gifts a special-needs child brings into their lives.

"Our children can have a regular life," Boggian said. "Maybe they need more patience and more support, but they can do it. It is great when parents start to believe that. If they believe it, their children will do it."

How you can help

Crecer Con Amor seeks sponsors for various activities for Latin children with Down syndrome, including dolphin therapy. To make a donation or for more information, contact Charo Boggian by e-mail at ajolote26@hotmail.com or (520) 327-3902.

The support group also needs volunteers to assist with the Buddy Walk Oct. 15 at Reid Park. All proceeds will benefit Crecer Con Amor, Down Syndrome Connection and the Southern Arizona Network for Down Syndrome. For registration or more information, visit www.sandsaz.org online or call 520-791-0344.

Mother shares joys, blessings of raising a son with Down syndrome

2007-03-10T13:38:00.000-05:00

By Pete Sheehan
Senior Reporter

Hicksville — When Robin Roach takes two-year-old Bryan shopping, people sometimes ask if her son has Down syndrome.

“Yes,” she answers.

“I’m sorry,” many of them reply.

“I’m not,” Roach responds.

“No one wants her child to have problems,” Roach noted, but she is hoping in her own way to educate people about what Down syndrome, a genetic defect, is and what it isn’t. That’s why she spoke at a recent meeting of the Long Island Coalition for Life here Feb. 26.

“He’s a joy,” Roach told the audience. She notes that he is only mildly mentally retarded — as are many such children. He has had delays in his physical development, Roach said, but she eagerly anticipates that he’ll be walking soon.

“My son is first and foremost a child, a two-year-old boy,” Roach said. “Down syndrome does not define him.” Her concern is that people often exaggerate the problems associated with Down syndrome, which include mental retardation and sometimes physical handicaps, and overlook the child.

Mothers’ stories

Her education efforts, Roach said at the meeting at the Joseph Barry Council Knights of Columbus Hall here, are not limited to random encounters in stores. Last year, she and other mothers compiled a book, “Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives.”

Through the Internet, Roach found a support network of other parents of children with Down syndrome. With this book, Roach hoped to pass that support on to other parents. In particular she hoped to assist pregnant mothers considering abortion because of a Down syndrome diagnosis.

“There are books out there, but many of them are burdened with medical jargon” and are not designed to give the information and assurance that parents need, Roach said. “I wanted a book that would give mothers the information they are looking for.”

Roach asked mothers she met through the Internet to share their stories. She joined forces with Kathryn Lynard Soper, also a mother of a child with Down syndrome and a magazine editor; they self-published “Gifts” through Amazon.com last year.

“It sold so well that it was picked up by a publisher,” Wood-bine House, and is scheduled to come out in July, she said.

Presumptions

When she was pregnant with Bryan, Roach and her husband, Kevin, already had two sons. Though she had decided against amniocentesis and alpha protein blood tests to check for fetal defects, she agreed to an ultrasound.

The perinatalogist who studied the ultrasound results noticed signs of Down syndrome and chastised her, Roach said. “What do you mean you didn’t have amniocentesis?” the perinatalogist said, and warned her that it would be too late for her to “terminate,” have an abortion.

“Of course I had no intention of ‘terminating,’” Roach said, but the perinatalogist’s presumption was upsetting.

Roach’s obstetricians were supportive and referred her to a mother who had recently given birth to a child with Down syndrome. “That was very helpful,” Roach said.

She also began researching the subject, met with a social worker from the Association for Children with Down Syndrome, and visited a school that the association operates. She also found support from her husband Kevin, her mother — “she was my rock” — her in-laws, and her pastor, Father James Bowman of Corpus Christi Church, Mineola.

“I was scared,” but greeted her new son with love and joy while diligently seeking help for him.

Treat disease, accept child

“Bryan is doing as well as he is because of early intervention,” a combination of medical vigilance and aggressive use of physical, occupational, and speech therapy. “He goes to a school for children with Down syndrome two half-days a week and looks forward to it.”

The problem, she said, is that most people don’t know about early intervention and assume the worst when they learn that a child will be born with Down syndrome. “It’s not that way with other diseases,” such as autism, cystic fibrosis, or cerebral palsy. “There they treat the disease and accept the child,” she said.

She cited statistics that women who receive a prenatal diagnosis of Down syndrome choose abortion 90 percent of the time. With new less invasive and more accurate testing procedures that are recommended for all pregnant women, Roach said, the number of such abortions is likely to increase.

The critical factor is prenatal diagnosis, she said, which confronts already anxious parents with the disturbing news while giving them few of the facts. “Plus, you are talking about pregnant women, whose emotions are already volatile.”

Roach advocates a 48-hour waiting period for pregnant women who receive a prenatal diagnosis of Down syndrome and a requirement that such women speak to a social worker experienced with Down syndrome before having an abortion.

She noted that a bill sponsored by Senator Ted Kennedy of Massachusetts and Senator Sam Brownback of Kansas would require physicians to be trained in counseling patients about fetal deformity. “I don’t agree with Senator Kennedy on abortion, but he and his family have been champions for people with Down syndrome.”

Though Roach admits to the difficulty of having a child with Down syndrome, “along with the heartaches come a lot of beautiful moments. I believe that God has used this to make me a better person, more patient.”

Her husband looks forward to Bryan and their other sons joining him in the Knights of Columbus some day. Roach held back tears as she read a letter that her older son, Danny, had written at school to Bryan. “It has made my sons more accepting.”

“I don’t care if you are different,” Danny wrote to Bryan, “because you are still my baby brother.”

Original text can be found here.

Kellen's Gift

2007-02-27T21:30:00.000-05:00

by Jodi Reimer.

“I knew when I saw your son, that he was an angel” said the tearful woman at church today.

Angel? I blinked and the morning flashed through my mind.

Kellen was taking a long time to eat his bagel and cream cheese. It was time to leave for church, but he wasn’t quite finished. The morning was not sitting well with him because he doesn’t like to be rushed. My husband, daughter, and I went out to the car to wait for him. Soon enough he appeared and begrudgingly got into the car.

During the short drive, while the rest of us were chatting, Kellen began practicing his four letter words. This is not exactly what we like to hear on the way to church. When we arrived, with our difficult morning in mind, we elected to sit in the second to last row. I thought that maybe Kellen would be less of a disturbance if he decided not to use his “quiet voice” in the back. Another reason would become apparent soon enough.

Sure enough, he was a little loud several times, and we gently reminded him to be quiet or put our finger to our lips. After the service as we prepared to leave, an older white-haired woman who had been sitting in the row in front of us, turned to talk to my husband. I had never seen her before, so I assumed that she might have talked with him earlier as he and Kellen are greeters at the beginning of the service. He started to talk with her while we put our coats on and picked up our belongings.

He turned to include me in the conversation and the woman introduced herself as a visitor from South Africa. She and her grown son requested some time to talk with us. It was more than a little awkward, as Kellen did not want to change his plans. He likes predictably and knows that after the service, we go out to the car. He was protesting about having to stop and wait. The woman did not want to talk in front of Kellen, but she did want to talk immediately. I asked my daughter if she would take Kellen out to the car, but he refused to leave without us. So, we did the best we could to talk with the woman and her son.

It was obvious that she was in pain. Her daughter who also lives in South Africa had just received some disturbing news about her pregnancy. It was unclear to me if the diagnosis was Down syndrome, but the doctors were saying that the baby’s brain was showing an excess of fluid. The doctors were urging her to terminate her pregnancy.

The grandmother was visiting her son in our town and had come to our church that morning asking God to show her a sign. During the service, something made her turn around and she locked eyes with my son.
My son was her Sign. Today my son was her angel sent from God to give her a message, a message that her granddaughter deserved to live, inspiration that they could be a happy family. That everything would be all right.

We gave her our address, email, and offered her a book to take back to Africa with her. Gifts is a collection of stories written by a diverse group of parents who have children with Down syndrome. We talked with the woman and her son about the gift our son is to our family. We explained that all children are a gift from God and who are we to say that his gifts are not good enough for us?

I left the church with tears in my eyes.

Today Kellen made a difference.

You can read more about Jodi, Kellen, and their family here.