Down syndrome occurs when a person has a full or partial extra copy of chromosome 21. One in 700 babies in the United States will be born with Down syndrome which means about 6,000 babies with Down Syndrome will be born in the United States each year, according to the National Down Syndrome Society (NDSS) website. They list common physical traits of Down syndrome as low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm.
The cause of Down syndrome is not known at this time and the only known factor for increased chance of having a baby with Down Syndrome is maternal age. For example, at age 35 a woman has a 1 in 350 chance of having a baby with Down syndrome and at 45 the incidence increases to 1 in 30.
If you have a family member or friend who has a child with Down syndrome, or you are in community with people who have Down syndrome, the NDSS has outlined some preferred language when referring to people with Down syndrome. They should always be referred to as people first. Instead of saying “Down syndrome child” or “He has Down’s,” the child is a “person with Down syndrome.”
I have a child with Down syndrome. What does that mean for his speech, hearing, language, and feeding?
Most children with Down syndrome will learn to use verbal speech as their primary mode of communication, but some children will use an augmentative or alternative method of communication called AAC. This would include a dynamic display device which may look like an iPad with pictures on the screen to communicate. The device has speech output when you touch a word or picture on the screen. An AAC device, or pictures are used to increase language skills. Providing your child an AAC device does not hinder language or speech development. In fact, using these forms of communication while your child is learning speech is beneficial.
Early intervention is key with all children learning to use language. Speech-language pathologists work with children from birth. You can contact “Child Find” in your state and they will set you up with early intervention services for your child at no cost to you. This is available for children birth to three. When your child turns three, she is eligible for services through your local public school district free of charge. You can also opt to receive private therapy services for your child with certified individuals. When finding a qualified speech-language pathologist, you can go to www.asha.org and they will help you find a speech-language pathologist in your area.
Due to the low muscle tone component to Down syndrome, feeding may be an issue, and a speech-language pathologist and/or occupational therapist who is trained in feeding can help you with developing appropriate feeding skills.
Children with Down syndrome learn language and speech through models and real life situations. At home, read to your child. Look at the pictures in the story. Label them, talk about them, talk about people are doing and repeat, repeat, repeat! Children learn by repetition of language and experiences. Talk to your child often. Talk while you are doing things even if you think your child is not listening. Talk in the bathtub. Talk at the grocery store. Talk while you are driving. Talk in the mirror. Talk at birthday parties. Talk at the library. Talk at the park. Talk while walking the dog. Sing songs. Sing more songs. Ask your child questions. Allow them to hear the different intonation in your voice when you are asking, labeling, or excited about something. Talking is effective, but so is listening!
Listening to your child creates an environment of communicative exchange. In one effective program called the Hanen Program, the program uses the OWLS (Observe, Wait, Listen) approach to communication with early intervention. In this approach, the program states that observing “helps recognize our child’s feelings and needs,” and waiting “gives our child a chance to express herself in her own way,” and listening “encourages our child to express herself.” As parents, it is important to look at facial expressions, body language, and recognize what is important to the child. Get on the floor, at the table, on the couch, and just play. Children learn through play and through normal everyday interaction with their family members.
The Hanen Centre | Speech and Language Development for Children, hanen.org/Home.aspx.
“Human Rights Organization for Individuals with Down Syndrome.” NDSS, www.ndss.org/.
Margina Busby, M.S., CCC-SLP