RAISING JOEY

31 for 21, October 6th

Jennifer Graf Groneburg’s book, Roadmap to Holland is a must read for any mother of a child who has Down syndrome. Her true words and raw feelings about when her son was born help to make any mother know she is not alone and she is not the only one with feelings like her own.

Another must read!!

31 for 21, October 3rd

Looking for a new book to read?? How about Gifts 2?

Throughout the month I’m going to post various books on Down syndrome. One of the best publishers who have books on disabilities is Woodbine House, stop by and check them out!
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Acceptance, courage, friendship, awareness, and joy–these are the gifts recounted in more than seventy inspirational essays included in Gifts 2. Edited by Kathryn Lynard Soper, the follow-up to the bestselling Gifts presents a broader perspective on Down syndrome and life by including passionate stories by siblings, grandparents, cousins, aunts and uncles, as well as mothers of older children. Friends, teachers, medical professionals, and coaches also share the joys of knowing and caring for someone with Down syndrome.

Like the previous book, Gifts 2 helps us see that the hopes and dreams family and friends have for a child with Down syndrome are similar to the ones we have for any child. And, more often than not, expectations are fulfilled–if not always the way we anticipated they would be. A grandparent, inspired by his grandson’s strong will, discovers the ability to persevere and not give up on a job. A brother who assumed he would be the person helping his sibling with Down syndrome describes how often it is the other way around. A young teacher remembers her first student with Down syndrome and it gives her strength and clarity when she is faced with her own child’s diagnosis.

This heartfelt collection is a source of comfort to other families, and offers insight to anyone who wonders how people with Down syndrome live today. Give the ultimate gift, share both volumes with family and friends, your child’s teacher or pediatrician–help raise public awareness and provide others a point-of-view they might otherwise miss.

Learn more about both Gifts books…visit the editor’s site!

new book!

Author inspired by special needs child
Sunday, July 26, 2009
By LESLEY FARREY PACEY

PASCAGOULA Hurricanes, hardship and the death of son couldn’t stop Mike Gilly from sharing his story of a special needs stepson who brings him joy.

“We expected Derek to be a water boy or something,” Gilly said. “But Derek put on pads and played in the junior varsity games. He ended up getting 15 career touchdowns.” Continue reading new book!…

Currently reading

Her story is so similar to mind even though she didn’t find out until after he son was born, and like many of you know, us finding out prenatally about Joey. Her thoughts, her feelings were so similar.

It’s truely amazing how one little extra chromosome has made so many of our stories so similar yet so different.

Currently reading…

More Than a Mom

This book was one of my Christmas gifts from my mother and so far, I LOVE this book! I can’t wait to read the whole thing! Below is the product description posted by Amazon…

“MORE THAN A MOM explores how women can lead rich, fulfilling personal lives while parenting a child with special needs. The authors’ skillful blend of research, personal experiences, and feedback from over 500 mothers across North America results in a book that is jam-packed with practical strategies, advice, and reassurance for mothers trying to create more manageable and fulfilling lives.

The mothers who were interviewed for the book have diverse backgrounds and family dynamics. Given their differences and the fact that their children have such varied disabilities, it s striking that these mothers face such similar issues. MORE THAN A MOM provides mothers with many voices and solutions that will resonate with their own circumstances. Husbands, extended family, friends, support organizations, and service providers will also want to read this insightful and fact-filled book.”

My Shelfari

I just found this and I love it! You can make your own personal virtual bookshelf to post on your blog. I had so many books to add to it, I decided rather than putting it on my sidebar, I would post it here once and also add it to my Down Syndrome FAQ page.

Usborne Books Black Friday Sale!

Usborne Books at Home presents their Black Friday Sale! Bring smiles to everyone on your list and save money, gas and time too. Choose from a huge selection of Books, Games, and Activities the whole family will enjoy! This Friday, skip the long lines, traffic, and stress and Save on GREAT Holiday GIFTS on SALE from Usborne – this weekend ONLY!

While you’re there, take advantage of these EXTRA savings!

-Check out Usborne’s Internet Specials - available while supplies last.
-Stock up on Fabulous Reading Sets - savings are substantial!
-When you order over $35 retail, you are eligible for Customer Specials.
-The Wonderful Winter Sets are a huge savings and make great gifts!

Dinosaur Excavation Kid Kits!

For the dinosaur lover in your family, this one is a great choice for Christmas! Dinosaur Adventure Excavation Kid Kit comes in either Stegosaurus, Triceratops, or T-Rex.

Each kit comes with a dinosaur skeleton in clay that your child can excavate all by themselves (tools included)! For ages 6 and up!

Why didn’t they have something like this when I was little?!

Trucks and Diggers Magnet Book

This is one of my new favorites! The Trucks and Diggers Magnet Book is great for any little boy (or girl) who loves big trucks! The book comes with 10 magnetic trucks that actually stick to the pages and your child can not only read the book but drive the trucks across the page as they do so! How cool is that?!

Trucks and Diggers Magnet Book
• Ages: 3 years and up
• Size of book: 10 7/8 X 10 7/8 inches
• Pages: 10 and 10 magnetic pieces

I wanna win!!!

Check out this awesome giveaway Christina from Prince Vince is having…

Yes, that’s right folks, a copy of Connie Wenk’s latest book, Aussergewöhnlich:Väterglueck and the cover model is the one, the only, Prince Vince & his daddy!

America According to Connor Gifford

Last night I finished reading one of the books I bought while at the NDSC convention in July, “America According to Connor Gifford.” Definetly a must read! I couldn’t put it down!

It’s written (and illustrated) by a young man who just happens to have Down syndrome, Connor Gifford with the help of Victoria Harris, and is about Connor’s view of America clear back to when the pilgrims arrived until present time.

I had the opportunity to meet Clifford and Victoria at the convention and they even signed my book!

You can learn more about Connor at www.connorgifford.com.

Beverly Beckham’s newest article

I always enjoy reading Beverly Beckham’s articles!!!

Learning love from Baby Grace

By Beverly Beckham,  July 20, 2008

She wasn’t the prettiest child in the room, because they were all the prettiest, babies still, not one of them over 3, flawless skin, bright eyes, shy, sweet smiles. But my daughter and I were drawn to this particular baby because she reminded us of Lucy, my daughter’s little girl, with her sweet round face and her light wispy hair and the thin pale line on her breastbone that told us she had had heart surgery, too.

“How old is she?” we asked her mother.

“Six months,” the mother said, and we gushed and said something like, “So cute.” And “Lucy is 5 now. Hard to believe.”

“What’s your baby’s name?” my daughter asked.

The mother said Grace. And we echoed the word, which means blessing, and it hung in the air, a name so weighted with truth.

Then we sat down, my daughter and I on one side of the room, Grace and her mother on the other.

And the speakers began their program.

This happened a week ago at the Seaport Hotel in Boston, where we were attending the National Down Syndrome Congress. We had signed up for the “New Parent’s Survival Guide” not because we are new parents, though my daughter is new enough, but because we wanted to meet the two speakers.

Kathryn Lynard Soper lives in Utah, has seven children, and contributed to and edited the book. “Gifts - Mothers Reflect on How Children with Down Syndrome Enrich Their Lives.” Jennifer Graf Groneberg lives in Montana, has three children, and has just published “Road Map to Holland - How I Found My Way Through My Son’s First Two Years With Down Syndrome.” Both women have blogs. Both are prolific writers. And both have sons with Down syndrome.

When Soper’s son Thomas was born, there wasn’t a book for her to read that told her what she wanted to know. There were guides and charts and medical treatises and a few stories about choosing to have a child with Down sydrome, but not a single book in which mothers talked about their experiences, their feelings, their lives, and their children. Soper wrote about her life with Thomas in her blog, and hundreds of mothers wrote back. And, in time, hundreds of stories were shared.

Soper collected and organized them and sent them to Woodbine House, a publisher specializing in special needs, and the stories got published, beautiful essays interspersed with photographs of beautiful children. Though the stories address fear and worry and preconceptions and misconceptions, the common denominator, what holds them together, is love.

That’s what no one tells you when you have a child who is not perfect. That love changes everything. That love propels you from the bed to the cradle in the middle of the night. That love is why you sing even when you’re bone tired. That love is what fills your heart with pride and your eyes with tears, sometimes many times. That love is the reason all parents, even parents whose kids have challenges that seem burdensome and overwhelming to everyone else, say with certainty, “I wouldn’t trade my child for any one else’s.”

Love is what the tests can’t measure.

When Lucy was born just five years ago, “Gifts” and “Road Map to Holland” hadn’t been published. Someone gave us “When Bad Things Happen to Good People.” Someone meant well, but Lucy was never a bad thing.

Sometime in the middle of the 90-minute workshop, when Soper paused and asked for questions, Grace’s mother raised her hand, stood up and thanked Soper for compiling her book. Then she went on to explain how this little collection of simple stories written by 63 ordinary women saved her baby Grace’s life.

“We had a week to decide,” she said. Her test had come back positive, the doctors were somber, the literature bleak. And every bit of life experience she and her husband had was limited to feeling sorry for and frightened by every disabled person they had seen but didn’t know.

“Gifts” took them beyond the stereotypes and showed them that “disabled” is a loaded and omissive word with all the bad left in and all the good left out.

“Road Map to Holland” does the same thing.

Two books of love stories. Two books that are already changing the way people think.

Beverly Beckham can be reached at bevbeckham@aol.com. 

Meet Annie

 I recently recieved a new book to review written by Heather L. Scharlua-Hollis called Meet Annie. It’s about a little girl named Annie who has a little something extra like Joey.

It’s a wonderful children’s book to help kids understand that children with Down syndrome are just like other children. And kiddos with DS can be accepted too!

And guess what?! Here’s the real Annie!

Isn’t she beautiful?!

There’s a Mouse About The House

I picked reviewing this book today for 2 reasons…

The first is, I absolutely LOVE this book. There’s a Mouse About The House, takes you on an adventure with a cute cut-out mouse through a house. You enter each new page through a slot on the previous page.

This book is awesome for toddlers working on their fine-motor skills!

The second reason I picked this book today is that we really have a mouse about our house! And it ate the cheese off of ALL FOUR TRAPS I set last night. Tonight I will try peanut butter! The little mouse already feasted on our potatoes, onions and garlic and I determined to keep him from getting anything else, not to mention it left little poopy presents and I don’t want to have to keep cleaning up after mouse poopy!

At Home With Down Syndrome

Wonderful article, take a minute to read it… 

At Home With Down Syndrome, By Caitrin Nicol

In storage at the Museum of Fine Arts in Boston is the secret to what one professor calls “the first Down Syndrome Association in the history of the world.” In 1982, Dr. Brian Stratford, a specialist in developmental disabilities at the University of Nottingham, suggested in the journal Maternal and Child Health that the Italian Renaissance painter Andrea Mantegna used a little boy with Down syndrome as the model for his Christ child. Stratford made a “clear characteristic diagnosis” of the baby based on his distinctive facial features and the shape of his hands and toes. The curator at the MFA dismissed this theory, attributing the work to an unknown, less technically astute follower of Mantegna, and calling the resemblance to a child with Down syndrome accidental. In the meantime, however, Stratford heard from a history professor in Rome. The Gonzaga family of Mantua, Mantegna’s sponsor, had a boy with an unidentified “sickness,” she said, and one of the artist’s own fourteen children shared this condition—a not insignificant factor in Ludovico Gonzaga’s choice of Andrea Mantegna as his court painter. Gonzaga and Mantegna appreciated the humanity of these children whom some might have preferred to hide away or let die, and that shared sensitivity gave them a “sense of purpose” with respect to disability which Stratford regrets has been all but forgotten by our society: “Perhaps Mantegna saw in this child something beyond the deficiencies which now so occupy our attention and perhaps then, the qualities of love, forgiveness, gentleness, and innocence were more readily recognized. Maybe Mantegna saw these qualities as more representative of Christ than others we now regard so highly.”

Down syndrome is a developmental disability resulting from an extra copy of the twenty-first chromosome. It is the most common single cause of human birth defects, occurring in about one in eight hundred births. Symptoms include mild to moderate mental retardation, lower muscle tone, an approximately forty percent chance of a congenital heart defect, and lesser but significant risks of gastrointestinal disorders and leukemia. Individuals with Down syndrome generally have outstanding social skills and in a supportive setting can be fairly high-functioning. Due to improving medical care, the life expectancy for someone born with Down syndrome has increased from twenty-five in the early 1980s to more than fifty today. In many other ways as well, a child born with Down syndrome today has brighter prospects than at any other point in history. Early intervention therapies, more inclusive educational support, legal protections in the workplace, and programs for assisted independent living offer a full, active future in the community. Adoption agencies report a high demand for children with Down syndrome.

However, the abortion rate for fetuses diagnosed with Down syndrome tops ninety percent. The alphafetoprotein maternal blood-serum test followed by amniocentesis are standard practice in prenatal care for women over thirty-five, who have an elevated risk of conceiving a baby with Down syndrome. Eighty percent of babies with Down syndrome are born to younger women, however, due to their higher overall fertility rate, and the American College of Obstetricians and Gynecologists (ACOG) recommended in 2007 that all pregnant women be offered screening for Down syndrome. While ACOG insists on its neutrality with regard to abortion, it is not difficult to interpret this move as an effort to reduce the number of individuals with Down syndrome who are carried to term. Obstetricians are not well trained in explaining the diagnosis and have little if any clinical experience with individuals with a developmental disability, and medical school deans indicate that such training is not a priority. A 2004 survey of mothers of children with Down syndrome, published by then-medical student Brian Skotko in the American Journal of Obstetrics and Gynecology, reported that the prenatal diagnostic process sorely lacked information on the nature of the syndrome. While the physicians did a satisfactory job of explaining the actual test procedures, the women felt that a discussion of the symptoms and the potential of individuals with Down syndrome was either cursory or delivered with highly negative overtones. One was shown “a really pitiful video first of people with DS who were very low tone and lethargic looking” and then told that “our child would never be able to read, write, or count change.” Others regretted that they had not been offered contact information for other parents who have children with Down syndrome—connections that, where made, proved to be one of the most important and supportive factors in the mothers’ decisions to continue their pregnancies.

Continue reading At Home With Down Syndrome…

Who says Usborne Books rock?!

First hand account of why Usborne Books are awesome! Jennifer Graf Groneberg said this about them…

“At my house, we’re big fans of Usborne books (what’s not to love?  The cute pig, the little duck, the “That’s Not My Monkey” which we’ve read maybe 1,000 times).”

 If you love Usborne Books, please let me know!

 Also, don’t forget about my pledge to donate 1/2 of my online sales income to Rhett and Parker for the next month. So please, check out my online store!

Usborne Books for a cause!

I’ve been thinking of ways how I can help out Parker and Rhett’s families with some of their medical expenses. I have decided to donate 50% of my online Usborne Books sales income to them both from now until June 10. That’s 25% for each of Joey’s buddies.

Please help spread the word!! Not only could you get awesome books for your kids but you will be helping these little guys to continue to get the help they need.

My Online Usborne Book Store

I also know that both Parker and Rhett LOVE books so if you would like to buy either of them a book as a gift, please email me at RaisingJoey[at]gmail.com

Stop by their mom’s blogs and say hello!

Praying For Parker

Rhett’s Journey
 

Independent Usborne Consultant

My new job!!

For a while I’ve  been throwing ideas back and forth on how to get myself some extra spending money. I thought out getting a part time evening or weekend job but then I want something more flexible because of all of Joey’s therapy & doctors appointments. So I started thinking about doing homeshows of somesort. Pampered Chef, Discovery Toys, and then I thought about Usborne Books.

Literacy is very important for any child, at any age. I wanted a job that my children could benefit from and what better way to do that than to become a consultant for Usborne Books!

 So, please take a moment and visit my online Usborne Book Store! And pass the word on! Thank you!

Roadmap To Holland

I started reading Roadmap to Holland by Jennifer Graf Gronberg the other day when I finally recieved it in the mail via amazon.com. She is another mom who has a child with a little something extra like Joey. I met her online a while back via blogging, her blog is Pinwheels. I’ve known for a while that she had been working on her book and it finally came out and I’ve been reading it every extra minute I have! I’m halfway through the book and don’t want to put in down!

Her story is amazing and one that I can relate too. Even though I had a prenatal diagnosis, her feelings seem so similar to mine. It’s worth every cent of the $14.00!

Newborn Needed for Filming of “Memory Keeper’s Daughter

*I just recieved this through the CDSC message board and wanted to pass it on to everyone incase anyone knows a newborn baby girl for this!!  

We have an assignment! Please help me out and forward this email to anyone you know anywhere in the US and Canada that might have contact with a brand new
Caucasian baby girl who has Down syndrome. Forward this to any list-serve you may be on for DS.The book “The Memory Keeper’s Daughter” is being made into a film for the Lifetime Channel. It is shooting in Nova Scotia in November.

They are looking for a baby girl born in October 2007 to appear in the film as the new born Phoebe. They only found one baby with DS born in 2007 and she is 6 months old. In Canada it is a law to screen every expectant mother for DS not just a guideline, scary isn’t it?I need to hear from any parent of a newborn who might want the opportunity for their little one to work in Nova Scotia in November 2007. I would also consider older babies weighing under 8 lbs. I know from my son Blair being a preemie he didn’t hit 8 lbs until he was about 4 months old. I have an agent that would negotiate all the details making sure to get appropriate pay and travel for the family. Please have anyone interested contact me at the DSALA office at 818-242-7871 or they can reach me by email at gail@dsala.org. Thank you for helping me with this search, and watch for the film on Lifetime next spring.

Gail Williamson
Executive Director
Down Syndrome Association of Los Angeles, Inc.
315 Arden Avenue, Suite 25
Glendale, CA 91304
818-242-7871 voice
818-242-7819 fax
gail@dsala.org
www.dsala.org

31 for 21, October 20th

Victoria’s Day By Maria de Fatima Campos

“Like any other preschooler, Victoria is engaged by the world around her, excited to play with her friends, sometimes happy, and sometimes not. But unlike her peers she has Down’s Syndrome. This thoughtful book follows Victoria on her typical day as she integrates into a mainstream nursery school. Young readers can compare and contrast their own experiences with Victoria’s as she reads a book, paints, bakes biscuits, and plays games. Though she may look a little different, the book shows that Victoria is really not so different after all.”

Reading level: Ages 4-8

Hardcover: 32 pages

Another chance to win!

If you entered Christina’s contest to win a copy of Cony Wenk’s book, Three Little Butterflies and want to double your chance to win, Cony is also giving away 3 copies of her book on her blog! Head on over to enter for a chance to win!!

Another contest!!

Christina over at Prince Vince Meets The World is having another great contest this week! This time she’s giving away a copy of Cony Wenk’s book “Three Little Butterflies“!!!

31 for 21, October 10th

Looking for a good book to help a young one understand more about Down syndrome. Check out these… 

• “My Friend Isabelle” By Eliza Woloson
• “I Can, Can You? “By Marjorie W. Pitzer
• “We’ll Paint The Octopus Red” By Stephanie Stuve-Bodeen

The Woodbine House is a wonderful online book store that has many books on Down syndrome and other disabilities.

Cookbooks

One of the moms from one of  the message boards I frequent share a cookbook that she absolutely loves that I thought I would share with you all…

The Sneaky Chef by Missy Chase Lapine

I went onto amazon.com to check it out and see what other cookbooks I could find that might have some recipes for me to make for Joey and came across these…

Kid Favorites Made Healthy by Better Homes & Gardens

Quick Meals For Healthy Kids and Busy Parents by Sandra K. Nissenberg, Margaret L. Bogle, and Audrey C. Wright

Big Book of Recipes for Babies, Toddlers and Children by Bridget Wardley, Judy More

The Baby Bistro Cookbook Healthy, Delicious Cuisine for Babies, Toddlers, and You by Joohee Muromcew

Does anyone have any of these? If so do you like them? Or do you have any other good cookbooks geared towards children to share?