19 February 2016
It’s impossible for me to know the emotions you had when you first learned that you were having a baby with Down syndrome. Some parents are angry, sad, anxious and overwhelmed. Others are accepting, hopeful and optimistic. The parents in our practice with Down syndrome children have probably felt all of these emotions, both positive and negative, at one time or another.
To a lot of parents, especially first-time ones, a diagnosis of Down syndrome seems like an insurmountable burden. But I want to reassure you that there are beautiful, amazing rewards that come with raising a Down syndrome baby. We’ve taken care of numerous Down syndrome children and their families through the years and have been so inspired by the love, joy and zest for life they have in abundance.
7 positive things to think about
To help make the journey that’s now before you a little easier, I offer these 7 thoughts that hopefully will enable you to appreciate and eventually be thankful for the special gift you’ve been given.
- First, your baby is a baby. You are not giving birth to a “Down syndrome” baby. You are giving birth to your baby, a unique individual who will resemble you and your family in some ways and will also have similar features to others with Down syndrome. I would encourage you to focus on the precious gift of a new life, not the label.
- Your baby will still achieve the usual milestones, even if it takes a little longer. Try not to compare your baby to typically-developing ones. Instead, concentrate on the things that he/she has accomplished. Your child will develop at his/her own pace, and you’ll find that even the little things can be cause for big celebrations.
- There is a lot of support and help available to you. There is a wide network of support for parents with a child who has special needs. Because the first years of life are so critical for a child’s future development, all babies born with Down syndrome are eligible for free early intervention services via the federally mandated Individuals with Disabilities Education Act (IDEA). These include physical therapy (to bolster motor skills and improve muscle tone); speech-language therapy (to heighten listening and speaking skills, as well as help with swallowing problems); and occupational therapy (to help children master life skills such as feeding and dressing oneself, opening doors, and holding crayons and pencils).
Early intervention, as described by Susan Skallerup in her book, Babies with Down Syndrome: A New Parents’ Guide, means “intervening early in a child’s life to encourage growth and development. Many different professionals are involved in providing EI services, including specialists in motor skills, language and communication, learning acquisition, and social-emotional development.”
Also, you may find this website helpful: The National Down Syndrome Society
- There is much beauty in Down syndrome. The color of your baby’s eyes (just like Daddy’s?), a captivating smile that breaks into hilarious laughter, small hands that are curious and quick…there are many, many lovely and unique aspects of your baby that you will come to cherish and love. Cast away the stereotypes of what beauty is and see the true beauty that exists right there in your child.
- Like all babies, your baby will experience a wide range of emotions. People might tell you (wrongly) that your Down syndrome baby will be happy all the time, which of course is ridiculous. The truth is that your child will display all types of moods—happy, sad, silly, angry, whiny, hysterical, delighted—just like any other baby.
- Weather the frustrations you may face by realizing that every child learns differently. For example, if your child has difficulty communicating verbally, teach him/her sign language. Remember, too, that an inability to express him- or herself is probably very frustrating to your child, as well as for you. We’ve found that taking a break and trying again a little later, maybe after a snack, often works wonders.
- Down syndrome will not define your child’s entire existence. Though probably not desired, this diagnosis does not have to darken your whole life. Eventually, it will even shift into the background of your normal family life. You will have bad days that have nothing to do with Down syndrome, and you will laugh and cry about other things. Hopefully your whole family will enjoy life, with all of its ups and downs, with your child, and take each day as it comes.
These days, people with Down syndrome are living longer and healthier
A baby born now with Down syndrome can expect to lead a full and healthy life. In fact, the life expectancy for people with Down syndrome has increased dramatically in recent decades from 25 years in 1983 to 60 years today.
We’re here to help, and to listen
At Westchester Health Pediatrics, we’re here for you and your child. Please come in and talk with us about any concerns or questions you may have about raising your Down syndrome baby. We have years of experience and lots of advice and guidance to offer, as well as a listening ear. Feel free to contact us, and we look forward to meeting you and your child.