Frequently Asked Questions
As soon as the diagnosis of Down syndrome is received, we recommend that you contact The Arc of Essex County’s Stepping Stones Early Intervention Program where support through trained professionals and parents are a phone call/email away. Through our Parent to Parent support component of the Early Intervention Program, parents are connected with veteran parents who know exactly what you are feeling and experiencing. In addition, no matter how young your child is, our experienced professionals can guide you in the most effective ways to work with your child.
Important things to remember:
Keep copies of everything and get notes from every therapist after every visit. These notes will help you track your baby's development.
Write down every question you have before the session with the therapist and write down every answer. No one can be expected to remember everything.
Some people prefer to tell people as they come into contact with them; others have sent out a group email to everyone. The main thing to remember is that people will take their cue from you. This is not a secret or shameful thing, and if you let people know that, everyone will feel more comfortable. You might find yourself angry at people’s reactions (or lack of reactions). Your anger is a normal part of the adjustment process. Some people will be angry if they get the sense that people are “pitying” them. Some people will be angry if they aren’t getting enough pity. The truth is, your anger actually has little to do with other people.
The National Down Syndrome Congress recommends the following evaluations to take place within the first six months of your baby’s life: Thyroid levels by a pediatrician, cardiology, ophthalmologist, audiologist, For more information on the recommended screenings your child should have at various ages, refer to www.ndsc.org for more detailed information on health guidelines.
Breastfeeding may be challenging in the beginning for a baby with Down syndrome, but it is a very real possibility. As you get to know your know little one, you will discover that babies with Down syndrome have physical characteristics that may have an impact on breastfeeding. Since babies with Down syndrome often have low muscle tone, good head support is important while he/she is breastfeeding. Likewise some babies may have a protruding tongue thrust causing some difficulty with latching on properly. You may be able to benefit from the support provided at the Stepping Stones EIP or from a La Leche League group. Every baby is unique even though she may have Down syndrome and sometimes a baby will breastfeed well quickly, and sometimes it takes a little time for breastfeeding to become well established.
Follow your Doctor’s recommendations about visitations. Please note: having the diagnosis of Down syndrome does not affect anyone visiting with your baby or you taking your baby outside to places. As you would with any child, follow your doctor’s guidance regarding visitors and taking him/her places.
Parents often start attending the Stepping Stones Early Intervention Program as early as a few weeks after giving birth. Parents receive therapeutic guidance regarding possible issues with their child’s sucking from the bottle or breast, positioning, and/or just support.
Once your child is home from the hospital, you can contact Early Intervention services through New Jersey Early Intervention by contacting Single point of entry contact number at 1-888-653-4463. NJ Early Intervention services use a natural setting model and are typically provided in your home or your child’s daycare.