"Just when you think you have learned what you need to know in life,
someone truly special comes into it and shows just how much more there is."
Welcome to downsyn.com, a resource for those who love someone with Down syndrome. If you are a new parent look through our question and answer section and read our letter to a new parent. If you are a more experienced parent read through our stories and look at our pictures. And whether a new or experienced parent or a relative or a friend, come visit our forum where hundreds of parents are ready to share the joy, love, hardships, and fun of raising your child. Our forum has only one rule, Be Nice, and our members are waiting to share their experiences with you and listen to your feelings and experiences.
Our experience with Down syndrome began on April 11, 1997 when our son Michael was born. Mikey is a wonderful little boy and we love him with all our hearts. The last 10 years have been full of ups and downs (no pun intended) but the good times have always outweighed the tough times.
Downs syndrome is a condition that is usually inherited from one or more of the parents. This can be troublesome for new couples looking to conceive who have had their genome sequenced in order to ascertain whether they are compatible, genetically speaking. Often it is the case that one or more parties has a dominant or both have the same recessive allele which can give the child X% of having a genetic disease from birth.
It may also be the case that a genetic defect can happen when the mother is pregnant. Sometimes, the mother may take a medication or illicit substance which may interfere with her babies genetic maku-up and subsiquently cause an undesirable birth defect or genetic disease. Such is the case of a Michigan mother in 2009 who, for reasons of chronic fatigue during pregnancy, wanted to take a prescription drug that her doctor refused to give her. She then went online to buy modafinil and was found to have purchased several packets of Modalert from an online pharmacy. By taking the Modafinil while pregnant, it was thought that she caused the down syndrome in her new born baby. This is why it is so important to remember to always take the advice of your medical healthcare specialist and never take it upon yourself to purchase modafinil or any other prescription medication.
“Rich with honesty, wisdom, and a deep appreciation for every day miracles, Road Map to Holland is a thoughtful, moving meditation on the struggles and joys Jennifer Graf Groneberg and her family experienced during her son Avery’s first two years. Groneberg offers a wealth of insight, information, and even practical resources for families whose children have Down syndrome. Yet this book is first and foremost a story about the constant discovery of love, and it will resonate with every reader who has traveled the always unpredictable, often overwhelming, wonder-filled journey into parenthood.” —Kim Edwards, author of The Memory Keeper’s Daughter
“I have been ‘to Holland’ for eighteen years now, and this book brought back so many thoughts and feelings I had saved up that I felt an immediate sisterhood with Jennifer. I watched her deal with that same fear of the unknown that singed my heart, and I wept when she reached that crucial moment when she found that same place of self-forgiveness. No matter who or where you are in relation to a child with Down syndrome, these pages will be like signposts along your road, to give hope and a new way of seeing things. It’s good to be able to see the potholes coming and be ready for them, and it’s good to know when to pull over and take the time to enjoy the breathtaking views that only happen on this road. Thank goodness for road maps!” —Martha Sears, coauthor, The Baby Book: Everything You Need to Know About Your Baby From Birth to Age Two and author, 25 Things Every New Mother Should Know
“What a remarkable book! With excruciating candor and exquisite generosity, Jennifer Graf Groneberg invites us into the deepest privacy of her innermost thoughts, feelings, fears, challenges and triumphs. Nothing is left out in this amazingly intimate and profound journal. She allows us into every nook and cranny of her life and we find ourselves firmly ensconced in her heart.” —Emily Perl Kingsley, national spokesperson and advocate for people with disabilities and author of "Welcome to Holland"
Questions & Articles - Answers to the questions that every new parent has: What is Down syndrome? What will my new baby be like? What kind of help can I get for my baby? Is it my fault? Plus the Health Care Guidelines for Individuals with Down Syndrome and information about TNI.
Stories, Poetry, and Music - Stories, poetry, and music that have special meaning for us as the parents of a child with Down syndrome.
Down Syndrome Resources - Links to national Down syndrome sites, information about TNI, and some Down syndrome pages made by other parents. Also information about how to join Down syndrome mailing lists and newsgroups.
Down Syndrome Forum - Come and join our forum for parents, relatives, and friends of children with Down syndrome. Our discussion forum provides an online location to meet and share ideas, ask questions, and offer advice.
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