This brochure was developed by parents of children with Down syndrome, in the hopes that by sharing our experiences we may help you to see yourselves as the parents of a beautiful, loving baby first, and the parents of a child with Down syndrome second. Please try to remember that despite any special needs your child may have, he or she is still your baby. He will have your looks and in many ways will be like every one else in your family. She will display her own temperament, develop her own sense of humor and will achieve her own talents within her own time.

As the parents of children who experience Down syndrome, we know many of the emotions you are now experiencing and will in the future. We understand the heartache, fears, joys, frustration, laughter and love that go hand in hand when you raise a child with Down syndrome. We developed this brochure as a way to give you 10 steps you can take right now to connect you with the resources and supports available to you. By taking these steps you will discover undreamed of strengths in your child and yourself. Starting here will not change the diagnosis, but it may change the prognosis.

1. Breathe deeply, relax and realize that you are not alone. The fact that your child experiences Down syndrome is only one part of who he or she is and will become as a person.

2. Read Babies with Down syndrome: A New Parents Guide by Stray Gunderson. This book is only a guide and you and your child may not experience everything discussed within this book.

3. Connect with the Area Agency that serves your region of New Hampshire. This is the agency through which you will connect with Early Supports and Services (ESS). The purpose of ESS “is to provide developmental, therapeutic and support services to children with delays or disabilities from birth to age three.” ESS will help you address your concerns, prioritize your needs, explore your resources, and set a course of action all within the comforts of your own home. ADVOCATE! It is extremely important you understand that you are your child’s strongest, most effective advocate. One parent’s story of their daily life is much more meaningful than a hundred professionals. You know your child best. You must always be vigilant, and ready to advocate for their needs.

4. Find other families that have a child with Down syndrome by connecting with Parent to Parent through your ESS provider, or search for your coordinator on-line at www.p2pnh.org.

5. Apply for Medicaid/Healthy Kids Gold. It is likely that your child may qualify via the Katie Beckett waiver, which allows Medicaid
to serve children with disabilities. Under this waiver, Medicaid becomes the secondary insurance that will cover expenses such as medical equipment, prescription co-payments and home health support not covered by primary health insurance policies. Your contact through ESS or the person at the Medicaid office who assists you should know all about this process.

6. Work with your child on a daily basis by incorporating the therapies you are learning about from your ESS provider within your daily routines. Don’t get discouraged. It will take some time but your child will learn. In the meantime, take a lot of pictures, play, laugh and enjoy!

7. Consider taking a sign language class. Studies have shown that even typical children benefit from learning how to express themselves long before they can tell us verbally. This will alleviate frustration on your part and your child’s regarding his/her needs. Utilizing sign language will promote language development.

8. If your child is born with a heart condition, doctors will first need to determine what type and whether or not surgery is needed. A Pediatric Cardiologist should be consulted. You will be taking in a lot of information, so write things down. Don’t be afraid to ask any questions at any time, day or night, to get a second opinion or to switch cardiologists. You need to have your child’s best interest in mind.

9. Begin annual consultations with an Audiologist for any hearing issues, an Ophthalmologist for any vision issues and a Cardiologist for any heart issues now or later on. Read Medical & Surgical Care for Children with Down syndrome by Van Dyke, Mattheis, Eberly and William.

10. If you have other children include them in what is going on. Listen to them and be patient. They are adjusting to this new person as well.