Q. We recently had a healthy little girl with Down Syndrome. What support system do you recommend, and what should we read?
A. Eleven years ago, our seventh child, Stephen, was born with Down Syndrome. Stephen's arrival brought a new level of needs into our family, which challenged Martha and me to develop a different set of parenting skills. Sephen has, in fact, taught every member of our family to be more patien and empathetic, just as though your child you will learn a whole new set of skills and a level of parenting you never dreamed you could have.
While it's easy to focus on the handicaps, or what Down Syndrome children seem to be missing, try to pay attention to the gifts your child has. Comparing her to others will tear you up. What they may lack academically, Down Syndrome kids make up for socially; they tend to be incredibly affectitonate and happy. We learned this the first year Stephen joined a mainstream school. Initially, his first-grade teachers - and even some parents - were skeptical about having a child with Down Syndrome in a class with typical kids. At the end of the school year the teacher had every student write a short essay on whether it had been a positive or negative experience to have Stephen in class, and teachers unanimously found that Stephen brought a level of empathy and caring to the children in the class - so much so that they all wanted him back the next year.
The following are more tips for parenting a Down Syndrome baby that we've learned over the years:
- Make your marriage a priority. Parenting a child with special needs will stretch you as individuals and as a couple; it will be the greatest challenge you have ever faced. What's more, you will be tempted to give so much of yourself to your child that it will be easy to get burned out as a person and as a mate. What all children need - and especially ones with special needs - are happy parents.
- Remember the needs of your other children too. If you have older children, you'll want to elicit their help in the care of your baby daughter. They should understand that you will need to devote more time and energy to her, and that you expect them to be more patient, understanding, and helpful. Still, everyone in a family has needs. If your other children feel that your infant is more "special" and is geting all your time and attention, they may begin to resent their new sibling.
- Practice attachment parenting. As with any child, you will need to become an expert when it comes to your baby. With a Down Syndrome baby this is even more important, since your daughter is not likely to give you verbal cues as early as other children. You can become more atuned to her by carrying her in a baby sling - what we call "babywearing" - for several hours a day. This not only makes life easier for you, but the closeness to your baby helps you learn to read her subtle cues and body language. If you are breastfeeding, try to continue doing so for as long as possible. Infants with Down Syndrome have very weak sucking muscles and are quite a challenge to breastfeed, so consulting a lactatation specialist with experience in this may be necessary to help you continue nursing.
- Start your infant out with brain-building fats. Breastmilk contains special brain-building fats, namely one called DHA (doctosahexaentoic acid), not available in US-made infant formulas. However, you can add this vital fat to your baby's formula by emptying a 100-milligram capsule of Neurtomins (available at most health food and vitamin stores) into her bottle once a day.
- Use different, but no less, discipline. While you will need to be realistic in your expectatitons of a special needs child, you don't have to lower your standards for discipline. When your daughter is older and you begin to discipline her, you will develop a parenting style which suits you and your family, as well as a style of discipline in which your child will learn to live within the boundaries of the family.
- Use resources wisely. Your natural tendency as a new parent of a Down Syndrome baby may be to tap into as many support groups and resources as you can. Yet we've found it more helpful to go for quality rather than quantity - look in your community for an early intervention program and a Down Syndrome support group you can join. A helpful resource is the National Down Syndrome Congress, which publishes, with Abingdton Press, an excellent book, The Circle of Friends. Be mindful not to spend so much time immersed in programs and support groups that you have little left over to meet the rest of your and your family's needs.
- Surround yourself with sensitive friends and family. Keep in mind that your friends and relatives may not know what to say to you. Do they offer you congratulations or sympathy? It helps if they see clearly how you see your baby and her special needs. If they observe that you focus on her positive traits ("She has such an adorable smile," or "She's such a cuddly baby"), it will help them develop a more positive attitude as well.
Since many of our children have been catalysts for writing a book, shortly after the birth of Stephen we started one about Down Syndrome. Eventually, however, we abandoned the idea because we felt that he was becoming more of a project than an individual. Which is why it's our hope that you will somehow write a "book" about your own, special child.