Down syndrome Association Hudson Valley
14 Zerner Blvd. Hopewell Jct., NY 12533 (845) 226-1630
To The Parent of a Newborn with Down syndrome
o Enjoy your baby. Play with her, read to her, rock her, cuddle with her, talk to her, gaze at her when she's sleeping, figure out what she likes - and do it often!
o Connect with other parents of children with Down syndrome. Look for a Parent Group in your area. Call or email the Down Syndrome Association Hudson Valley, 226-1630 or dsahv@ymail.com, to connect with other families. Parent Outreach Coordinators are available for phone calls and home visits to offer support and answer any questions you may have:
- Melissa Deschamps, 845-633-8806 or mel@ericdeschamps.com
- Courtney McDermott, 845-313-6081 or Courtney.r.McDermott@gmail.com
o Learn more about Down syndrome. You probably have lots of questions about your child's diagnosis and what it means for the future. Much information is available on the internet; some through local bookstores and libraries. Check out the copyright dates. Anything published before 1990 probably is out-of-date and may not be very helpful. Woodbine House Publishing (www.woodbinehouse.com) is a wonderful resource on Down syndrome, including books on developing gross motor skills, developing fine motor skills, developing communication skills, teaching reading and math, and medical and surgical concerns. There are also helpful DVD’s and books for children.
o Find out about Early Intervention programs in your area. Every state has an Early Intervention program for babies, from birth until the third birthday. This program is of no cost to families and provides valuable therapeutic services and education in the comfort of your own home. To contact your local county office, see the NY state website listed below. Click on Municipal/County Contacts for the Early Intervention Program at the bottom of the page.
- http://www.health.state.ny.us/community/infants_children/early_intervention/
o Take care of yourself. While it's probably the last thing on your "to do" list right now, you can better care for your child if you care for yourself, too. Spend time nurturing the relationships with your partner, other family members and friends. Accept help when it's offered.
o Connect with a health care provider familiar with Down syndrome and its unique medical issues. You may want to supplement care provided by your current doctor or nurse practitioner or you may be looking for a new provider. Some cities are lucky enough to have a Down Syndrome Clinic, specializing in the care of babies with Down syndrome. In other cities, you may want to look for a developmental pediatrician. Many HMOs and large clinic systems have a developmental pediatrician on staff. Providers who see lots of children with Down syndrome can be a wealth of information for you and your primary physician. Contact Down Syndrome Association Hudson Valley for physician recommendations, 226-1630.
o Investigate county resources. Check your local phonebook and look for a county department name such as Human Services, Community Services or Developmental Disabilities. Your county also may have a web site where you can find out how to connect with a case manager. A case manager should be able to help you find services that may benefit your child and your family. A case manager can help you connect with a school district, find available community services and tell you about financial resources you may qualify to receive. Families often use these services when their children are older. It's helpful to have connections in place to use when you need them.
o Don't be afraid to grieve. Grieving is normal and people express it differently - sadness, tears, anger, fear, depression or withdrawal. It's okay to cry. The baby you have may not be the baby of your dreams. Many parents of children with Down syndrome feel this way initially. Most also learn that - eventually - they dream new dreams.
o Remember to enjoy your baby. Marvel at his fingers and toes, stroke the hair (or fuzz!) on his head, read Goodnight Moon again and again, watch him watching you, sing to him and give him one or two - or more! - hugs and kisses.