%22The Journey Ahead%22 Video

This video, entitled, “The Journey Ahead…Consider the Possibilities” was created by the Down Syndrome Association of Cincinnati showing footage of local families as they share their experience of family life with a child with Down syndrome.

Helpful Links

National Down Syndrome Society
http://www.ndss.org/

Information for Prenatally Diagnosed Families 
http://www.downsyndromepregnancy.org

Active discussion board with Moms of babies with Down syndrome
http://community.babycenter.com/groups/a315/down_syndrome

Free Resources about Down syndrome 
www.downsyndromediagnosis.org

New & Expectant Parents

It is never easy to learn that your child has or may have Down syndrome. This unexpected news may generate a wide range of emotions, concerns and unanswered questions.  The DSAJ is here to offer you support and guidance.  We encourage you to learn all you can about Down syndrome and to embrace hope for a promising future.

The DSAJ would like to provide you with information and support to help you begin this journey. We have materials and books available to send you, and we are available to answer any questions you may have. Please check out our Lil’ Stars group, geared towards newborns to 5-year-olds.

Please contact us at 904.353.6300. You may also email Debbie Revels. If you call after business hours, please leave a message and we will return your call as quickly as we can. We look forward to hearing from you.

Understanding a Down Syndrome Diagnosis

To download a free copy of ‘Understanding A Down Syndrome Diagnosis’, which contains accurate and up-to-date information about Down syndrome along with helpful resources, please CLICK HERE.

Down Syndrome Pregnancy

www.downsyndromepregnancy.org is a resource which walks expectant parents through their pregnancies, provides many resources and offers connections with other parents who have walked in your shoes.

Congratulations – you’re going to have a baby!

A letter from a mother of a beautiful daughter who happens to have Down syndrome

Read Mothers Letter

Like me, you had some genetic testing done. I was in my early 40’s and knew I was at risk for having a child with Down syndrome. IF our baby had Down syndrome, we wanted to be prepared. We already had three children (13, 11 and 6 years of age). This was an “unexpected” pregnancy, but we were all thrilled. The results of my amniocentesis came back. Our baby had Down syndrome. We were devastated. Yes, we knew I was “at risk”, but we never expected a positive result. The chances were so slim! How could it happen to us? We experienced the many stages of grief: tears, anger, fear, depression, anxiety, and agony. We thought our lives would never be normal again. I couldn’t stop the tears from flowing! I couldn’t talk about it! I couldn’t sleep! I overate! I dreaded the birth and even more so, the future. But, when the tears and the fear finally began to subside, we remembered the reason for the amniocentesis – preparation. With the help of professionals (which might include: an obstetrician, developmental pediatrician, genetic counselor, pastor or priest, etc) and many organizations and support groups including the Down Syndrome Association of Greater Cincinnati, we gathered much information. We became knowledgeable in medical considerations and treatment, developmental delays and interventions, therapeutic and community programs. With the help of family, friends and our faith, we gathered the strength and courage needed to accept and provide for our child with special needs. As our baby grew and developed in utero, and as we explored the literature and started planning for the future, our feelings of fear and disappointment began to change. Hope and possibilities began to emerge. Certainly, love was always there, but it began to grow and blossom and become contagious. We wondered what “Sarah” would look like. Would she look like the other kids? What kind of a personality would she have? Would she have medical problems? What kind of delays could we expect? Would we be able to deal with her “special needs”? Would she have friends and be accepted into the community? Many of the answers became obvious. As she has many of the same genes as the rest of the family, of course she would resemble us. The other kids had great personalities, why shouldn’t she? Many of the possible medical complications could be treated and/or resolved. With the correct groundwork, guidance and intervention, special needs could be addressed and delays minimized. With our commitment and love, she would be encouraged to reach her full potential and with the assistance of family, friends and neighbors, she would be accepted and integrated into the community. On September 24, 2005, three weeks early and amid joy, anticipation and some fear, Sarah arrived. She looked perfect and beautiful to Mom and Dad. We welcomed her into our hearts and home and as with any child, we knew the rewards would be great. Sarah is a treasure beyond measure. She has filled our lives with wonder and delight, achievement and unconditional love. She is more like a typical child than unlike one. The road will be rough at times. There are going to be delays and disappointments along the way, there are going to be obstacles and hurdles to overcome, not just with Sarah, but with all our children. I wish you the best of luck and may you truly enjoy, cherish and love this new addition to your family!

 

Ways to Help

Why Donate to DSAJ?

People often say they give in order to “make a difference.”  This phrase means different things to different people.  By donating to the Down Syndrome Association of Jacksonville (DSAJ), it means you WILL be making a difference and helping us fulfill our mission to empower individuals, educate families, enhance communities and together, celebrate the extraordinary lives of people with Down syndrome.  Your donation, enables us to do such things as offer educational workshops for parents and self-advocates on hot topics, subsidized funding for a variety of programs, some of which include; speech therapy, occupational therapy, physical therapy, computer skills training, sports programs, wellness/fitness programs (Cheerleading, Basketball, Soccer and Weight Watchers) and age appropriate social activities.  These are just few ways in which your giving will make a difference!  To those of you have supported the DSAJ in the past – thank you!  We hope that your generosity towards our mission continues.  To those of you who may be first-time donors, I urge you to explore our website to learn more about our programs and how we strive to serve individuals with Down syndrome and their families in the Northeast Florida and Southeast Georgia.

Thank you for considering the DSAJ regarding volunteer opportunities. We offer monthly socials for all age groups. Occasionally we will need volunteers for these events. We also have some larger events throughout the year that we need volunteers for.

Please complete our online Volunteer Application here and we will be in touch with you shortly. All information is kept strictly confidential and we thank you for your interest in helping the DSAJ.

Many employers offer matching-gift programs, and will match any charitable contributions made by their associates, and sometimes their retirees. These programs can double, and even triple, the impact your gift can have on our organization! Ask your personnel department or human resources representative for more details.
Although the DSAJ is not a United Way-funded agency, you can designate Down Syndrome Association of Jacksonville to be a recipient of your gift made through payroll deductions, or as an outright donation. Simply write in Down Syndrome Association of Jacksonville, 630 May Street, Jacksonville, FL 32204 in the Donor Choice designation section of the United Way pledge form, and let us know about your designation so we can look for your gift.

Like to shop? The AmazonSmile program will donate 0.5% of the price of your eligible AmazonSmile purchases to the charity of your choice. Visit them HERE and make sure to select the DSAJ as your charity of choice.

The DSAJ is very grateful for our past and current sponsors, and has numerous opportunities for future sponsorship, including our annual Golf Classic, Buddy Walk, Basketball Program, DSAJ STARZ, and World Down Syndrome Day. For more information about specific opportunities, please contact Jennie Ponder, DSAJ Operations Manager, or call our office at: 904-353-6300. OUR VALUED SPONSORS

Family Social Groups

NewbornNewborn - Age 5
The Lil’ Stars group is geared towards parents expecting a baby with Down syndrome and parents of children that are newborn to age five. The children, siblings and grandparents are welcome and encouraged to attend. We also encourage and promote all members to attend these meetings. Although the focus is on our newest and youngest members, we can all benefit from getting to know one another and sharing knowledge. Our meetings are informal and often include a guest speaker on topics of interest to the group. There is also time to socialize and enjoy being with each other’s children.

Please come and share your ideas, support and parenting ideas with others. This group is led by Desiree Jomant. Contact Desiree at the DSAJ office at 904.353.6300 or via email to be added to the contact list.

ToddlerAges 6 - 12
DSAJ’s Shining Stars group is comprised of children between the ages of 6 and 12. The group’s purpose is to provide social and informational activities throughout the course of the year for both the children and their families. The children enjoy the fun activities, which are designed to enhance physical and social development. We encourage parents, grandparents, family members and friends to attend as well. Periodically, we bring speakers and educators in to discuss various topics that are helpful and keep our members up to date.

This group is led by Cheryl English. Contact Debbie Revels at the DSAJ office at 904.353.6300 or via email to be added to the contact list.

TeensAges 13-18
DSAJ’s Teen Group is alive and well. Fun outings are planned for those ages 13 – 17 with Down syndrome to meet and enjoy each other’s company while participating in a range of activities. The purpose of this group is to provide socialization within the community and opportunities for friendships to develop. Join us to make friends, develop confidence & self-esteem, practice social skills and most of all – HAVE FUN!

The group is led by Dani Frei. Contact Debbie Revels at the DSAJ office at 904.353.6300 or via email to be added to the contact list. Parents are encouraged to drop off their teens to foster independence and to give both the parent and teen respite!

AdultgroupAges 18 - Up
This Group is an awesome group of friends. We provide a safe, supervised way for young adults with Down syndrome to meet and enjoy each other’s company while participating in a range of activities. The purpose of this group is to provide socialization within the community and opportunities for friendships to develop. Join us to make friends, develop confidence and self-esteem, practice social skills and, most of all, HAVE FUN!

This group is led by Desiree Jomant. Contact Debbie Revels at the DSAJ office at 904.353.6300 or via email to be added to the contact list.

NorthernstarsNassau & Camden Counties

This group is designed for fun. We encourage all of our members who live in Nassau County or Camden County to participate in the socials planned for this group. This group is led by Vanessa Brock and Desiree Jomant. Contact Debbie Revels at the DSAJ office at 904.353.6300 or via email to be added to the contact list.

Adults
Are you in St. Johns or Clay County?

This group is forming now to plan fun activities for those in St. Johns’s County and Clay County. This group will be led by Joanne Alicea. Contact Debbie Revels at the DSAJ office at 904.353.6300 or via email to be added to the contact list.