Overcoming odds with Down Syndrome kids

The effects of Down Syndrome may vary from child to child. What is important is to recognise and nurture talents and capabilities from early on.

Down Syndrome is a chromosomal disorder which causes delays in physical, intellectual, and speech and language development. The characteristics of Down Syndrome were first described by Dr John Langdon Down in 1866. However, it was Dr Jerome Lejeune who in 1958 discovered that it was caused by an extra chromosome on the No.21 pair, hence the syndrome is also known as Trisomy 21. (As opposed to the usual 23 pairs or 46 chromosomes in a human, a Down Syndrome person has 47 chromosomes.)

Children with Down Syndrome have anatomical and physiological differences in the mouth and throat areas that affect feeding, chewing and swallowing, and speech. The difficulties are in:

Feeding

Feeding an infant or child with Down Syndrome can be challenging as most have some degree of low muscle tone or hypotonia, which affects all muscles in the body, including those of the mouth, tongue and face. These are the muscles used for feeding, swallowing and speech.

Hypotonia in the tongue, face and mouth makes feeding difficult (but not impossible). A baby with Down Syndrome may have trouble creating a tight seal around a bottle teat or breast and may have weak sucking. Contrary to what was believed, children with Down Syndrome do not have large tongues. Rather, they tend to have a small mouth or oral cavity, as well as poor development of the sinuses. Because of this, they may experience breathing problems, which affect how well they can feed and swallow. To compensate for this lack of space and alleviate breathing problems, these children are often seen with their mouth open and tongue protruding.

In older babies, tongue protrusion interferes with how food is placed in the mouth and how much food gets transported from the front of the mouth to the back of the throat. This makes it difficult for the tongue to learn proper movements to manage solid food. As long as children do not develop the proper tongue movement patterns for chewing and swallowing, they will choose foods that are easy to swallow, such as porridge and noodles, or they may refuse solids entirely.

Irregular and crooked teeth that come in later also affect how well food is chewed. Foods that are not chewed adequately may lead to constipation and other gastrointestinal problems. Sometimes, a heart problem may cause a child to feel tired and less motivated to finish their food. In addition, some children are hypersensitive to food around or inside their mouth. This may cause them to choke or gag on food.

Speech and language

Children with Down Syndrome are usually delayed in speech and language acquisition. While typically developing children acquire first words between 12 and 18 months old, children with Down Syndrome may not begin to speak until about two years old. The speech difficulties that children with Down Syndrome experience are partly related to strength, timing and co-ordination of the mouth, tongue and face muscles. When they begin to speak, their speech sounds may be difficult to understand, they may leave out some sounds in words or their speech may be unclear because of hypotonia.

Most children with Down Syndrome have better receptive language skills than expressive language skills. This means that they understand language better than they are able to express themselves using words. They tend to have good vocabulary and pragmatics.

Pragmatics is how language is used in social interaction. They have the desire to communicate, and are great users of gestures and facial expressions to let people know what they need. Children with Down Syndrome typically have difficulty with the rules of grammar. They may say “me want milk” instead of speaking in a complete sentence.

Hearing

Speech and language difficulties are also partly caused by hearing problems. The majority of children with Down Syndrome have some degree of hearing loss, which may be due to structural problems of the ear itself, leading to a sensorineural or permanent hearing loss.

Hearing loss may also be caused by middle ear infections and fluid buildup in the ear (also known as “glue ear”). When this happens, these children experience a conductive or temporary hearing loss, where they are unable to hear some speech sounds. When the fluid subsides, hearing is restored. This fluctuating hearing loss means that the children’s hearing is inconsistent.

The ear canals of children with Down Syndrome tend to be narrower and smaller. Thus, wax or cerumen can easily block this passageway, causing conductive hearing loss as well.

Hearing is important to speech and language development. When a child cannot hear speech sounds, he is unable to process words containing those sounds, and language understanding is affected. Both sensorineural and conductive hearing loss lead to what is commonly called “speech and language delay.”

The effects of Down Syndrome can vary widely from child to child. Some children need extra care and attention while others may lead healthy and independent lives. Early intervention services that focus on motor, language and self-help skills help to meet a child’s specific needs and encourage development.

Like any other kids, children with Down Syndrome are capable of learning throughout their lives. They have their own talents and capabilities, and it’s important to recognise and nurture these.

Farah A. Mohd Alkaf is a speech language pathologist. She will be conducting a workshop for caregivers on “Helping A Young Child With Down Syndrome Eat, Talk & Play,” at La Salle University Hall in Petaling Jaya, Selangor, on Nov 3 (2-6pm). For registration and more information, contact Coreen Paul of JPL Training Track at [phone] or email [e-mail].